Waiting

Waiting for a baby to be born is an exciting, knackering and slightly scary time. Waiting for those first contractions is like being in an airport and wondering when your flight will be boarding. You are packed and as ready as you can be, and all that you can do is now is to grab something to eat and try to be patient.
I remember looking forward to meeting my two older children. I knew that labour would be the hardest thing that I had ever done (although the second one was much easier); but imagining holding your beautiful new baby in your arms can get you through many contractions and indignities.
I am also looking forward to meeting my youngest child, Samuel, who will be born soon. I imagine holding him in my arms for the first time. I picture the joy on my first two children’s faces as they meet their baby brother. I will love having photos of us as a family of five together.
But, the truth is that he may never get to meet his siblings and wider family. We have no idea how long he will live. Those first few cuddles as my husband and I hold him for the first time, may also be the last. That first photo of me holding him just after birth, when let’s face it, I will be far from photogenic, may be the only picture that I ever have of us.
I packed my hospital bag for myself and him, but he may never wear some of the nappies and clothes that we bought. I am preparing myself for labour, just as I have done before, but we are having to plan his funeral at the same time. Many people don’t even plan their funeral or think about their death even when they are old and ill. We are planning our son’s funeral even before he has left the womb.
Waiting for Samuel’s birth is like waiting for a flight, but this time it’s not to a destination that you ever wanted to visit. Although things look the same from the outside: I am well, he will look healthy when he is born, it will be a natural birth, we will still get to cuddle our baby; the place that we are travelling to looks dark, feels scary, isn’t normal.
I love Easter, and not just because of the chocolate eggs. Believing that Jesus chose to be born on Earth, with the intention to die as the sacrifice for the sins of all people, is the most important part of the Christian faith. That the son of God wanted to be born as a helpless human baby to then take the sins of all of us upon himself, and die; and therefore to save those who put their faith in him from eternal death, is a truly amazing thing. It’s so unfair and love-filled and seemingly crazy that many people can’t get their heads around it.
By dying on the cross for me and everyone, Jesus has taken away my fear of death, because I know where I am going.
But does that take away death’s sting? No.
Does that mean that I don’t mourn loved ones when they die? No.
Does that mean that seeing Samuel die so young will be easy? Definitely not.
I am confident that we will meet Samuel again one day in Heaven. His heart will be perfect then. But that doesn’t mean that we won’t suffer when he dies; or that we’ll ever ‘get over’ his death.
God gives and he takes away. There will be no crying in Heaven, but there is plenty of it here on Earth.

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.

♥️

Today I have a new accessory: a heart monitor.

I have to wear it for a week, and it records 24 hours a day. Thankfully, I am allowed to unplug it for a few minutes to have a shower every day.

It is annoying though, the sticky pad is itchy and uncomfortable. It’s like wearing a scratchy necklace that you can’t remove, not even to sleep.

I need it because I have been experiencing some issues that may be heart related, and have a dodgy pulse. Hopefully it’s nothing serious, and I am not worried about it. I guess I am so used to medical stuff now that it feels like another trivial health quirk.

It may be a complete coincidence, but people who have left-sided chest radiotherapy are warned that it can lead to heart disease even many years later. Obviously I don’t plan to have this.

I am a stickler for anniversaries. Tomorrow is 3 years since I had my last round of chemo. I can’t believe how quickly the time has gone.

I am starting to feel like a cancer veteran now. I can see myself in 30 years’ time, banging on about my experiences to the closest glazed-eyed youth.

Stylish.

 

 

 

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?

Work after cancer

One of the side-effects of cancer that you aren’t really aware of until it happens to you, is the financial cost.

I stopped work the day after my cancer diagnosis, and had 9 months off. Thankfully I have a very supportive workplace so didn’t suffer with a dramatic loss of income while going through active treatment. I am in education, and it was considered too high risk (to me) to be in work at this time.

I did return to work shortly before starting radiotherapy, and was able to work every morning before travelling the hour-long journey to have radiotherapy. I was determined to do this, as was desperate to return to ‘normal’ life. But it was incredibly tiring! I had no energy for housework, socialising or anything much really, for those five weeks. It was very difficult. But it did mean that I was earning again, which I both needed and wanted to do.

I suggest that if you or a close family member are diagnosed, that you look into what benefits you qualify for. Macmillan can help with this  if you’re not sure where to start.

Macmillan benefits info.

Cancer takes a toll on your finances. You may not need benefits, but it is worth looking into.

Also, if you have critical illness on your life insurance, speak to your insurer as soon as you can.

As for going back to work, there is no date that you ‘should’ go back. Every cancer, person and family is different, so don’t let anyone tell you that you need to go back, if you don’t feel ready. However, if you can go back part-time, I would recommend it. I felt so much better (mentally) for returning to work. I felt useful again, and was completely bored with with being at home.

You may not be able to go back to work as quickly as you would like, though. Often there are complications from treatments, not least of all fatigue. Fatigue is not just feeling a bit tired. It’s something that many cancer survivors have to put up with for years; long after friends are expecting you to be back to perfect health again. My advice is to be kind to yourself. Cancer is not like flu, you don’t suddenly spring back.

Of course, you may not be able to afford to be off work for long. Make sure that you know all of your rights in the workplace. And get support from friends and family: could someone make you hot meals for your first week back at work, or help with your laundry or grocery shopping? Don’t be afraid or too proud to ask for help. Often people do want to help, but they aren’t sure how to.

You may not feel like going back to the same job. Many survivors don’t feel like the same person after cancer. You may suffer from anxiety or PTSD, and may not be able to go back to a high-stress or long-hours job. If so, give yourself some time to think about what you really want, amd look into different options. Talk to loved ones to see what they think.

When you do return to work, make sure that you keep your manager in the loop, so that they can support you. They can’t help if they don’t know that you are struggling. All people who have been diagnosed with cancer are protected by the law, and employers are not allowed to discriminate against you. You are entitled to reasonable adjustments, and to apply for flexible hours. Could you work from home one day a week?

Macmillan discrimination info

Going back to work can be surprisingly difficult, but it is one way to try to reclaim your life; to forge a ‘new normal’. Just make sure that you only do it when you are ready.  Speak to your employer so that they can support you. And don’t expect everything to be exactly the same as before. Take your time with any changes, and remember to be kind to yourself. ☺

 

 

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.

 

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. 😎