My 5th cancerversary

The 5th cancerversary is a big milestone for survivors. And 5 is a big number, definitely. Sadly it doesn’t mean that it will never come back. Cancer can hide in your cells, even spread to many parts of your body, even decades after treatment for the primary cancer has finished. But, of course I am grateful to be well now, and happy to have been around for those extra years with my family.

This year, the whole world decided to join in with the chemo feelings of social isolation; loneliness; possible loss of income or job; fear of being really sick and dying; lack of control; and general inconvenience. Doesn’t feel great does it?

Strangely, this isolation caused by covid 19 has helped me to feel less isolated. Because we are all in this situation together, my family has not been singled out for a change. That feels much more manageable. We’ve got it a lot easier in fact, than many people do. We are not NHS or key workers. All we have to do is stay home. Thankfully, so far none of my friends or family has caught the virus.

When I received the unexpected shielding letter from my hospital last week, I was not as relaxed about it. I have had a few random health problems over the last few years, including an awful cough and breathing problems caused by a chest infection that didn’t heal for 6 months. But I suppose that it’s the chemo that got me on the list.

So, once again, the shadow of cancer hangs over me, meaning that I am again seen as a vulnerable person. I have been put into the ‘poorly person’ box  again, and I don’t like it at all. I think that the biggest problem is one of identity. I am Alex. I am not a cancer victim. I am not my illness. I needed to remind myself that the letter doesn’t change this. They are, in fact, looking out for me. That’s a good thing, that the NHS cares about little old me.

The other issue is one of control. I have been in uncontrollable  situations many times, so have learned this lesson before. But I guess it’s a lesson that needs to be learned again. Strangely, there is so much strength from admitting weakness, by realising that there are very few situations where you are actually fully in control. Nobody is always strong.

That’s the advantage of having faith in a God so much stronger and wiser than me. I don’t need to pretend to myself and others that I am god of my own life. Because I’m not. I didn’t choose when or how I was born, and I won’t choose when or how I die. I have found a peace in that.

For now, I am enjoying my lovely house; garden full of new life; and family who I get to spend more time with.

I will never be grateful that I had cancer, but I am here, I got through it. And if that isn’t a good reason to eat chocolate cake, I don’t know what is.

 

 

 

 

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

 

 

 

Covid19 diary week 1: 22-29 March

I first heard of the latest coronavirus in late December: it was far away in China then. Since named Covid 19, it is now the subject of 90% of all conversations, and traditional and social media outlets.

I decided to keep an online journal, so that I can look back on this ‘unprecedented’ time in a few years. If the zombie apocalypse hasn’t hit by then, of course. I cannot promise to make it interesting, but it will be honest.

The govt shut down schools (except for children who are at risk, disabled, or have parents who are key workers) on Friday 20 March. So for most parents in the UK, the 20th was the last normal day is what could be a long time.

Dropping my daughter Bethany off at school that morning, it all felt so normal. Only one child was crying, and everyone else seemed pretty calm.

I went into work that day, (I work in a college), also for the last time in a while, and besides it being very busy, it also felt normal. Although there was an odd feeling in the air, a sense of being on the edge of an invisible cliff.

That Friday night, I started thinking about how the following week would look for us as a family. Although we don’t have to homeschool, sitting the kids in front of the TV for 8 hours a day seems a little lax, so I made a list, and blogged about it, of things to do with kids when at home. We have already done some of those things, so it wasn’t a waste of time.

School at home ideas

It turns out that I didn’t really need to plan home schooling, as my kids’ schools both send work through online every morning. It only takes a couple of hours to complete, but combined with home learning stuff, I reckon that’s plenty. I had ordered text books for Maths and English online for both Connor and Bethany the previous week, so they do a little of that most days too. Also, Bethany has chosen to do a self-directed project on amphibians, salamanders specifically. So we have some books, and I have found online resources about that too.

Anyway, we have a rough plan every day, that gets written up on Bethany’s blackboard; of registration, English, break, PE, maths, lunch, playing/ garden/project/ art or baking. We don’t always follow the plan, and sometimes leave out PE (although we do go for a long walk/ scoot every day, which is PE I guess.)

Sometimes we video call friends or family. I am aware how difficult this is going to be for younger kids, who can’t just text or Watsapp their friends  like my son does. I think that when life goes back to normal one day, many of us will have forgotten how to do small talk. Hopefully, it won’t make us all even more self obsessed too. It doesn’t look that way, if the NHS volunteers and kindness that I see on social media is anything to go by.

Anyway, thankfully my kids have a good attitude to learning, and just get on with it every morning, without having to be asked. I do keep checking in, but it’s proving to be much easier than expected so far.

I have some work to do too; as well as never ending housework and keeping in touch with some elderly and vulnerable people that I am looking out for. I am also focussing on my mental health, by walking, exercising at home, getting into to the garden when it’s sunny, reading books, and art.

To be honest, at the moment it feels more like a strange holiday than anything that is particularly dangerous. That said, we are all following government advice, not doing any food shopping except when necessary, and only going out once per day. Plus the ubiquitous hand-washing.

I went for a long walk today, and it was so quiet. The sun was shining and the birds sounded  very pleased with themselves. I expect that the levels of air pollution have dropped so quickly, that this year nature is going to amaze us. It’s good that the plants and animals are going to get a much-needed respite from some of the human destruction. It’s like the Earth is telling us to slow down.

Most people are being more sociable now that they are less busy and not seeing nearly as many people. Dog walkers are generally the friendliest (and I already recognise a few of them from my regular walks and chats about their pets: I love dogs); but young and older people are saying hello as we walk past each other, much more than usual. Connor has asked a couple of times whether I know this or that person, but no, I don’t know most of them. We do always keep 2 metres away, I hasten to add, before anyone criticises me.

It is sad to see the playgrounds taped off with warning signs, but we wouldn’t be using them now anyway. It’s just sad.

I didn’t know that I could ramble so much…

Monday: speech marks, maths with Connor, #DrawwithRob

Draw with Rob Biddulph

Tuesday: Joe Wicks PE, baking cookies and nerf fight.

Wednesday: signs of spring and spring craft, also clothes in the apple tree.

Thursday: scoot in the Park, NHS rainbow drawings in window, clap for the NHS at 8pm with people around the UK.

Clap for the NHS

Friday: set up the piano, minibeast count in garden, sing to Nanny.

Saturday: guinea-pigs play in their new run in the garden. Blisters from too much walking. Monopoly.

Sunday (today): write to Grandma and friend, online church x 2, chilling.

I saw some friends while out today: we had a nice shouted conversation to each other from across the road. They have a dog. I wish I had a dog now, more than ever. The guinea-pigs are lovely, but it’s not the same.

Boris went down with a mild form of covid 19 this week. It’s no surprise, but it does show that nobody is immune. The deputy chief medical officer today announced that we might be in lockdown for the next 6 months! The mind boggles. It’s so hard to imagine living life this for half a year. But it doesn’t scare me. It’s just so surreal. My husband Mike says that this is probably all a dream of his. I don’t believe so. If it is  he had better wake up quickly.

BBC news

Have you noticed that when you watch TV or read a book, when they talk about hugging or going out for a meal, you tsk at them and feel morally superior? Maybe it’s just me. It’s quite incredible how quickly our minds can adjust to massive changes. Makes you wonder what other social rules we have grown up with and therefore see as normal, that other cultures would find offensive.

I am tired of thinking now. Goodnight.

School at home ideas

With all schools closing in the UK from next Monday, I have been thinking  about how best to cope with kids at home, for what could be months.

I am going to try to be organised, and do a mix of activities each day. We’ll see how that goes. By week three, it’ll probably be pjs and popcorn in front of the TV most days. 😐

So, here are some suggestions for myself, and anyone else who may be interested.

Talk

Talk to your children about the coronavirus, they will be worried too. It’s better to chat about what is happening (age appropriate) rather than pretend that everything is ok. They will already know that something is wrong if they go to school and/or you watch the news.

Be honest that sometimes people will get on each other’s nerves. But agree we will all try to be kind and work on our patience too.

 

Structure

Most kids and adults will benefit from some structure in their day. I plan to make sure that we are all out of bed and dressed by a sensible time. Doing a mix of different learning, creativity and getting outside, as well as meals and chilling time of course, will probably work well. A few pj and movie days will be ok though, too.

 

Use school’s resources

Most schools will be sending paper and online resources home with students. Make sure that you make as much use of them as you can. Teachers have worked hard to put them together. If there is an online forum where kids can communicate with their teacher and school friends, even better.

 

Get outside

Until we are banned from stepping outside the door, or public parks close (let’s hope that it doesn’t get to that, but it might), make time to go for a walk, scoot or cycle, every day with your kids. Without exercise and fresh air, most people are going to struggle with their physical and mental health, grown-ups included.

There are also exercises that you can do inside, such as pilates, yoga and stretching. There will be loads of ideas online. I found this one  which looks good, from the NHS:

NHS exercises

Kick the kids out into the garden. If they are old enough, there are many free or cheap tasks that they could get on with unsupervised, if you need to work from home, like:

Weeding.

Make a bug hotel.

Simple Bug Hotel for Kids

Dig a patch of soil and count the number of mini beasts.

List all of the plants, and research their names if you don’t know.

Chalk drawing on paving stones.

Piles of pebbles, Makka Pakka style.

Feed the birds and see who visits.

Draw a plant or item in the garden.

Write a poem about what you can see, hear and smell while sitting outside.

Have a picnic.

Get small pots or a section of the garden for the kids, and plant flowers, fruit and vegetables, and record what does or doesn’t grow.

On rainy days, do puddle jumping, and older children can measure the circumference and diameter of puddles and pebbles.

Measure and record the temperature and rainfall every day.

The RHS website has some great ideas.

 

Write

Short stories; comics; letters to grandparents and friends; a diary (this is a pretty odd time: it will be fascinating to read back on it years later); facts about their favourite animal. All writing is good.

You don’t need to be too worried about grammar and neat handwriting, unless that’s your thing. More important is encouraging children to write and have fun with it. They could tell you about their favourite book, amd them write their own short version, with their friends’ and family’s names and a major change in it. Such as write Little Red Riding Hood from the wolf’s point of view, or where Cinderella accidently gets lost in the forest and meets the wolf too.

Or they could write a mystery story, where their most precious toy gets stolen, and they are the detective.

They could write their favourite jokes, or make up a recipe for the best dessert ever.

If you have two or more kids, they could write and act out a short play. Base it on well loved film or book, if they can’t think of any ideas.

Ask your kids what they would like to learn more about, get them to do some research and write an essay, story or newspaper article about it. Ideas include frogs, the Amazon rainforest, Disney films, castles, anything that your child finds interesting.

British Library has some good writing ideas, such as writing an animal story or making a miniature book.

 

Read

Read with children and encourage them to read every day. It doesn’t have to be fine literature: comic books; books that you think are ‘too young’ or ‘too old’ for them; newspapers and magazines all count. If you can’t do anything else, you can read with your kids before bed every night at the very least.

Have a look at #freebookresources on Twitter.

 

Be creative

You might not  consider yourself to be an artist, but most kids will happily draw, paint or do craft if encouraged to. It doesn’t have to be with expensive supplies either. Use what you have in the house.

– Make a tall tower with only loo roll tubes and sellotape.

– Draw a bunch of fruit, portrait of your brother or your pet.

– Make a comic strip about your friends and family.

– Make cards for friends, to post.

– Scrapbook some photos.

– Let older children take photos on your or their phone or device, and look at them together, discussing which ones were best and why. Is it the subject, light, composition?

– Learn a new skill from Youtube videos.

– Follow artists and illustrators on Twitter, who have regular drawing challenges and art lessons.

Jabberworks

#DrawWithRob and #portraitchallenge on Twitter

are good.

There are some free paper craft ideas and downloads on this blog:

Joolswilson.com

 

Wider learning

Maths can be brought into activities such as baking- get your child to measure and weigh ingredients; set up a pretend shop where your child needs to count and give you the correct change; learn fractions with cakes or pizzas.

Let kids research a subject that interests them. They could do a project, with many activities based around a theme. For example, my daughter has been learning about Poland at school. She could draw maps; learn some of the language; make a traditional meal from the country; write a story set in Poland; look for non-fiction books in the library (while they are still open.)

 

I have found some sites that cover science, maths, quizzes, educational games etc. The BBC has many good resources on their website.

https://www.oxfordowl.co.uk/for-home/kids-activities/fun-maths-games-and-activities/

https://www.bbc.co.uk/bitesize/collections/primary-games/1

The Beano is always fun, and has some educational stuff.

https://www.beano.com/categories/geography-quizzes

 

Let’s be honest, we are all going to go a little mad over the next few months. Try to get everyone to have a little space most days, even if everyone is home. One could go into the garden, one to read in their room, someone else has a soak in the bath. Anything to reduce the stress levels.

Hope that this helps a little, and good luck! 🙂

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.

January again

January. Such a weird time of year. Many of us have eaten, drunk and spent too much over Christmas, and are now expected to come up with an unrealistically long list of things that we are going to achieve in the coming year. We are supposed to be healthy, have big goals and look forward with unbridled joy to the the amazing new year. Sod that. I have always thought that new year is such a disappointment.

Cancer hasn’t helped with that. For the last few Januaries, I have not wanted to look back over the past year, nor look ahead too far either. That’s the thing with cancer, it tries to steal your future, even if you have been given the ‘No evidence of disease’ good news.

I went to a NYE party at a friend’s house this year. It was just what I needed- a chance to be sociable, be silly and absolutely no pressure to look cool for social media (in fact, I’m pretty sure I was the opposite), to or get raving drunk to ‘prove’ how much fun I was having.

I realised that it’s been several years since I haven’t either dreaded or ignored the new year celebrations. For the last few years, that was thanks to cancer and its long list of treatments, side-effects (such as social isolation) and associated illnessses; and before that thanks to pregnancy or having a baby and not a lot of sleep.

So how do I feel about the start of another year?

Well, it’s hard to be too positive, as 2017 was supposed to be my going-back-to-normal year, when in fact it was a succession of illnesses and other unfortunate events. There were a few of highlights, such as having all of my family together; two cute arrivals; and Christmas, which I really enjoyed (and actually felt well on the day! 😁)

But, generally, I am feeling cautiously optimistic. I have a few Very Good Events to look forward to in 2018. Having a life-threatening disease is great at helping you to value every celebration; every birth and wedding and new start, because there were never any guarantees that you would be around to see them.

And when you have been told by the doctor that you are unlikely to be around for too many more… but I am able to live in the moment and not worry about the future, now that I can’t take having a long life for granted; in a way that nobody who has never been confronted with their imminent mortality just cannot understand. It’s a blessing in disguise, because it helps you to chuck out the junk of life, while holding onto the precious, much more easily.

I know that whatever happens this year, I will be glad that I am here to experience it, even the bad stuff.

If there was one thing that I could wish you, it would be that you could see how amazing this gift of life is: never perfect, often surprising, and far too short to waste worrying about all the junk, like how cool you look on social media. 😎

 

But for now, just sleep.

Slowly, I open the door.

Quietly, I walk in.

Flat out on your back

And arms spread wide like a hug,

You sleep.

 

Gently, your breath,

In and out,

In and out,

Fills my heart.

 

Too soon, the day will start.

Rushing around,

Getting ready for school,

Hurrying out the house.

But for now, just sleep.

 

Golden hair cascades in waves

Over the pillow.

Eyelids flicker ceaselessly.

Of what do you dream?

 

You do not know that I am here.

You do not know how grateful I am

To be so.

Soon the day will begin.

But for now, my beautiful girl,

Just sleep.

 

Softly you breathe,

In and out,

In and out.

And every breath sounds like

Hope.