Broken-hearted

I wasn’t sure whether to write this blog, but I know that it will help me to process. I don’t feel strong enough for this. But, a few people have reminded me over the last few weeks just how strong I am. Even though I feel weak at the moment.
Every life is a miracle. Every baby that is born has won against the odds and is cause for celebration.
When I found out that I was pregnant, after the initial shock, I was happy that my body has recovered so beautifully after some nasty cancer treatments. As someone from my church said to me, this baby really is a miracle. I had been told by doctors that I wouldn’t conceive naturally. I was even offered fertility treatment, which I declined.
I did, however, say to my husband Mike fairly early on, that some people would judge us for daring to have another child after cancer. Some would think that having more than two is madness anyway; and if the baby was ill, they would be quick to blame the cancer or its treatments.
My pregnancy has been surprisingly easy: little sickness, little fatigue. I feel physically stronger than I have done for years. The 12 week scan showed no problems at all, and I was referred to an obstetrician due to my medical history. She asked about my cancer treatments, including which chemotherapies I was on (they are very diverse, and you get different chemos for the huge range of cancers); as well as other medications. She said that there are absolutely no concerns due to cancer. My having had treatments (a few years ago now) would not even slightly increase the risk of any illness or disability to my baby. One thing that she did mention was that I didn’t need to be referred for my medical history, but I should have been due to my daughter’s.
When my daughter was born (a long time before I had cancer), there was a valve that should have closed straight away at birth (the human body is very complex) but hadn’t. She went grey when she cried due to lack of oxygen getting around her body. She was resuscitated twice soon after birth, and then taken to Special Care Baby Unit. A cardiac consultant who happened to be visiting from Bristol at the time, did a thorough heart scan in SCBU while we watched. He said that she would need a heart operation in Bristol, in the next few days. Obviously this was a complete shock to us, as nothing had been picked up on any scans, and there is no family history of heart problems.

We told family and close friends, and spent the next few hours watching her connected to numerous cables and monitors, and praying for healing. Amazingly, by the next day her heart was perfect. There was no need for any operation or even follow-up, and we were never even told her actual diagnosis at the time. She is completely healthy and almost never ill.
When we saw the obstetrician, she said that sometimes there is a small risk of younger siblings having heart problems if an older one had. This was the first we’d heard of it. Any baby that is born, no matter how healthy, young and awesome its parents are, has a 1% chance of having a heart defect. Often these are minor. A baby who has had a sibling with any heart problem, generally has a 2-5% chance of having a heart defect: usually these are minor. These are fairly tiny percentages we are talking about. I doubt that many people deciding to have a baby find out what percentage chance there is of their baby having this, that or the other defect, illness, or disability. If they did, they would probably not take the risk, and get a puppy instead.
My obstetrician wasn’t concerned, but said I could have a 24 week scan, on top of the normal 20 week one, just in case. I went away feeling reassured.
So, besides a niggling feeling that something wasn’t right, I went fairly confidently to my 20 week scan. The sonographer was very thorough. Baby wasn’t in a good position, so I had to go and empty my bladder. She spent a while looking at the heart, and then asked about my daughter. I can’t remember her exact words, but they were something like:
“There is something wrong with your baby’s heart.”
That was the moment that everything changed. Any hopes of a healthy, happy pregnancy and baby were gone.
The sonographer would not talk about it anymore, understandably as she isn’t a cardiac doctor. She took another scan and some photos of the baby, and went off for a few minutes to complete a referral form for our nearest cardiac specialist hospital, in Bristol.
My husband and I were upset, but there was still a chance that the sonographer had got it wrong, or it was only a minor defect. But, having looked more carefully at the baby’s heart on the second scan that she did, I could see very clearly that the heart wasn’t right. A large part of it seemed to be missing, and although I am not medically trained, I knew that something was very wrong.
We were told that Bristol would contact us for a scan soon, and left the hospital, to go and tell our children and family some very bad news. We had an awful two week wait until we saw the foetal heart sonographer, consultant and obstetrician in Bristol. While others celebrated a ‘happy new year’, we knew that 2019 would be an incredibly difficult and horrible year, just when things had finally started to look up.
The foetal cardiac consultant confirmed soon after the very detailed scan that baby has the very worst type of heart defect. The heart can never be fixed, and baby will never be well. There was also concern about other organs’ functions. They told us that an option was to terminate. We didn’t have to decide then, but were sent away and told to get back to them. Mike and I had been worried before the scan that if the news was very bad, we may have different opinions on how to proceed.
Thankfully, we both quickly agreed that the best decision for our baby was to carry on with what would essentially be a ‘normal’ pregnancy (I am breathing for him at the moment), and allow the baby to be born. The doctors can’t tell us how long baby will live after birth, but it may be hours or days. This is called comfort care, where the specialist nurses and doctors ensure that the baby doesn’t suffer any pain, but that it will be allowed to die naturally, hopefully in our arms.
We decided to find out the baby’s sex, to help us think of it more as a little person. It is a boy. We wanted to name him before birth, to give us a chance to get used to his name. We asked our children if they had any suggestions, and our daughter said “Samuel.” This name was already on my short-list of boy’s names, so his name is Samuel. It means ‘heard by God’. In the Bible, Samuel’s parents dedicated him to God as a young child. When I read the Bible as a child, I was always in awe of his parents, who must have trusted God so much to let their son go. He audibly heard God talking to him, from a young age.


The NHS doctors, nurses and palliative care team are doing a wonderful job of looking after us and making sure that everything will be in place for the best possible birth experience for me, and the best care for our family once he is born. They will make sure that we have as calm and special a time together as a family of five, no matter how short Samuel’s life is. They will take photos and fingerprints and put together a memory box for us. They are trying to get us space at a hospice, for if he lives long enough for us to go there. I have a wonderful cardiac nurse who is keeping me updated on all of the meetings that the many teams are having about us, and the numerous appointments that I am having. She is an ex-South African too, and an absolute Godsend.
The palliative care team have told us that we are a very rare case, in that our baby isn’t born yet but that we know, barring a miracle, he will die. We have discovered that most people in our situation choose to terminate. They are making lots of plans for us, in case I or Samuel are ill after birth, that we are still cared for well. We will be meeting the NICU (Neonatal Intensive Care Unit) team, and see the private suite where I will hopefully be able to give birth. We can also visit the hospice.
I have come to realise that, even though he may only live for a few hours, my youngest son’s life is just as valuable and precious as anyone else’s. People don’t like to talk about death, yet we all know that we are going to die one day. I am not worried for Samuel when he dies: he will be in Heaven, safe and free from pain.

Please don’t avoid or ignore us for the next few months in case you say the wrong thing. If you are a good friend or close family and genuinely care about us, your ‘wrong’ words will be much less painful than losing a relationship with you.
That being said, please don’t tell us that we should ‘have more faith’ or quote lots of Bible passages at us as though we haven’t read the Bible before; or that you know exactly how we feel because your cat died last week. Also, please do not tell us if you decide that you know why Samuel is ill. You don’t know why and would only be showing your ignorance. People often want something or someone to blame, but your opinions on the matter will not be helpful, now or in the future.
If you want to help, please feel free to pray for us. Also, send an occasional message to let us know that you are thinking of us, so that we don’t feel too isolated. If you have lost a child, please know that you are welcome to talk to me about them. Your story is valuable.

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We are all artists

Like many kids, I loved drawing. I would do it a lot: mostly portraits of my cats sleeping, and also making picture books. Once I made a little book called ‘The Woodland Folke’; it was about squirrels and other British animals in a very British setting, which is odd as I didn’t go anywhere near the UK or even Europe until I was 16.

I did art as a teenager too, but slowly grew out of it as I grew older. Nothing unusual there, sadly. As someone once said, every child is an artist, so why are so few adults? It’s so sad, because creativity is brilliant for stress relief and escaping the noise and screens of life.

As a 33 year-old cancer patient, my life suddenly got strangely quiet. Yes, I still had my family and kids and numerous hospital appointments, but there was a lot I couldn’t do. I had chemo fatigue, I was hugely restricted on socialising, and I was house-bound for much of the time. What I could easily do, without leaving the house or being subject to germs, was draw.

I found #shapechallenge (run by @StudioTeabreak )on Twitter, and started to draw small and umimpressive doodles most days. It didn’t tire me out, let me be creative, and gave me a sense that at least I had done something ‘useful’ that day. It also offered a sense of community which had suddenly slowed to a trickle once my treatment started.

It was wonderful.

Now, 3 years later, I can draw so much better, and still love the artistic community and support on Twitter. Now I regularly take part on #PortraitChallenge which I never thought I would be good enough to do. Novices, book illustators and all sorts of creative types take part, and it’s great.

I also do drawings just for the sheer pleasure, and as gifts for friends. I have also contributed to the #breastcancerart project, which recognises the theraputic value of art for those living with or after cancer.

I realised that every time I draw, I feel happier. Some of the chaos of life is silenced and I have a little more peace. If something causes so much joy and isn’t illegal or bad for me, I would be crazy not to do it!

I believe that we are all made to be creative, but adult life squeezes it out of us until we are fooled into thinking that we can’t make or do anything beautiful. For some it’s visual art, others music, others baking, writing, carpentry or dance, but I believe that there is an artist in all of us, desperate to get out there.

Sometimes, I think that my drawing isn’t good enough to share, or that because I’m not using paint that it’s not ‘real’ art, or that people will judge me for showing off; but I know that those are lies and I will never be fully the person who I am made to be if I allow myself to be silenced.

And actually, what other people think of my art isn’t important (although of course I want it to be liked); because drawing makes me happy, and therefore is of great value. What could be simpler that that? 😊

Go to

http://www.jabberworks.co.uk/virtual-studio/

For more info on #shapechallenge and #portraitchallenge

For more about the breast cancer art project, go to

https://breastcancerartproject.wordpress.com

 

 

 

Autumn returns

The leaves are turning yellow and orange again. The air feels cooler, and night falls more swiftly. I love Autumn because it is beautiful, but also because it reminds me about the briefness of life.

Summer seemed never-ending, and was it really that hot? But here we are at the start of a new season. And soon it will be winter, with its icy dark days and bleak trees. What could be good about winter, besides the first few hours of snow, and hot chocolate?

I think that without the reminder of our own mortality, life is all too easily taken for granted. Knowing that one day we will die, reminds us to enjoy what little time we have; to make the most of what we’ve been given; to hug our loved ones more tightly.

And after the emptiness of winter, we know that a new life awaits us. We look forward to it. Death and life are opposites, yet like two sides of the same coin. There is no need to fear winter, because one day spring will arrive.

For now, I will breathe in the scent of woodsmoke, delight in the colours, and be grateful that I am here to enjoy another Autumn.

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.

IVF Journal Part 1: A New Approach

Brilliantly written article by a good friend.

Faith, Fertility and Me

It has been six weeks since a surgeon pierced holes in my ovaries to try to make me ovulate. It didn’t work. We are disappointed but we’ve managed to rationalise the operation as a means to an end, another hoop to jump through on the road to parenthood, rather than a solution in and of itself.

Until now, my treatment has been all about trying to regulate my menstrual cycle for long enough to give us the same chance as any other fertile couple (which, by the way, is only 20-25% each month). The odds have always been stacked against us and, despite the increasingly invasive treatments we’ve tried, things have not improved.

It’s time for a new approach. We can’t conceive without help, so help is on its way.

On Tuesday, our consultant referred us for IVF (in vitro fertilisation). ‘In vitro’ means happening outside the body in artificial…

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♥️

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.