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?
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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. 😎

 

Two years later…

I realised this morning that it’s two years since my double mastectomy.

Thinking about how much has happened in those crazy couple of years, it actually seems much longer. I would love to say that as soon as active treatment was finished, that my family and I went straight back to pre-cancer ‘normal’ life… but that would be a lie. The truth is that nothing is ever quite the same again.

Your illness bubble suddenly bursts (and lots of people  stop praying for you: it’s almost a tangible difference), everyone says how well you look, and you are expected to pick up exactly from where you left off, with nothing more than some scars and shorter hair to mark the ‘journey’.

The reality is so much more complicated and difficult to explain to anyone who hasn’t gone through it.

Perhaps some stats will shed a little light:

“At least 500,000 people in the UK are facing poor health or disability after treatment for cancer –

At least 350,000 people living with and beyond cancer are experiencing chronic fatigue.

Around 240,000 are living with mental health problems, which can include moderate to severe anxiety or depression, and post-traumatic stress disorder (PTSD).”

This is a small part of a long list, provided by Macmillan cancer support.

Many relationships break down soon after a cancer diagnosis as well, especially when the patient is a younger woman. And with the hormone treatments that I was on for a while, they are so soul-destroying that the fact that any marriage survives them is a miracle.

Cancer’s slimy fingers reach into every aspect of your life: your health, your mental health, your relationships, your parenting, your career, your finances, your vision of the future, your life expectancy.

I want to say that I am actually very optimistic about the future, and I am not afraid of cancer or even of possibly dying young  (although would rather not); but it’s no use pretending that I am the person that I was before. And Mike and the kids have been through the mill too: their lives have been massively affected and changed too.

The best advice that I could give to anyone who is close to someone with a life-changing illness (or their partner or child) is to be kind, listen and don’t fob them off with “Oh, but you look so well.”

 Anyway, I was meant to be talking about my double mastectomy… it’s only boobs, if you have to have one, you’ll get over it, and I would much rather be alive in an imperfect body than be a gorgeous dead person. 😊 

I’m still fabulous, I’m still here, and I’m going to live the best life that I can. 

#breastcancerreality

 

Farewell Nabeel

An amazing man died this weekend. He had stage 4 (incurable) stomach cancer, and the doctors had put him on palliative care. It wasn’t a big surprise that he died, but it is incredibly sad.

http://www.nabeelqureshi.com/about/

Nabeel Qureshi was born into a devout Muslim family in the US. A Christian friend who he met at university strongly encouraged him to disprove Christianity. Nabeel was desperate to do so: he was full of faith in Allah. Of course he could not prove that Jesus is not the son of God, no matter how hard he tried. He was born again, after finally realising the truth.

He has degrees in medicine, Christian apologetics and religion. He was studying for a doctorate at Oxford University when diagnosed with cancer.

It is painfully unfair that someone so young (34), intelligent and full of faith in God, died. He could have achieved so much more if had lived longer. His daughter would have had a father; his wife a husband.

So many people around the world were praying for a miracle, that he would be healed. It is easy for us as Christians to get angry at God for allowing Nabeel to die. How dare he?

The problem is that we just can’t understand it. Why would God allow this young man to die? Unfortunately, we will only get the answer to this and many other questions, when we too die. Then, as believers, we will be able to ask God face-to-face. I have no doubt that our all-knowing creator had perfectly good reasons for this, and other suffering, to happen… it’s very hard for us to get our heads round it though, right? It just seems so unfair.

We don’t see the full picture, we can’t understand, and sometimes that sucks. We like to believe that we have all the control in our lives: choosing our friends, our jobs, who we marry, how many kids we have and when, where we live, etc. And of course we do have a lot of decisons to make, and responsibilities.

But we never get to choose when or where we are born, who our parents are, and when we die. We like to think of ourselves as masters of our destiny, but ultimately, when it comes to life and death, this is an illusion.

The fact is that every day that we live is a gift from our maker, God. We may rage at his unfairness is taking away young lives, but in reality, we were never promised long, healthy, wealthy lives, without a moment’s pain. Quite the opposite in many cases actually, especially for Christians.

My heart breaks for Nabeel’s family and friends, but thank God for his life. Thank God for our lives, no matter how short or painful they may be. Thank God that he sent his son to die as a sacrifice for us, so that when we die we can live forever with him. Thank God for his love, for hope and for every day that he gives us on Earth.

It’s not all about how long you live, or how many countries you visit, or how many children you have.

Much more important is knowing in your heart, on the last day that you live, where you are going. That you are going to meet your Heavenly Father: the one who loved you even before you were born, the one who send his son to die in your place.

I know that Nabeel had this faith, and that he is happy now in Heaven, probably asking Jesus some of those difficult questions. 

Seeking Allah Finding Jesus