Samuel’s birth

I said that Samuel would be born in May, and I was right.

My induction was scheduled for Monday 29 April in Bristol, but the hospital was too busy that day to fit me in. They called to ask me if I would be happy to get a call sometime overnight to go in. I didn’t want to wait longer than necessary, so I agreed. We thought that it would make more sense to already be in Bristol for if I did get the call at 1am; rather than trying to wake up properly before heading down the motorway.

So Mike and I stayed at a holiday home on Monday night, one that his parents had rented for the week, in order to be close to the hospital when I got the call. My parents were staying in Bristol too, and my sister flew down from Scotland to be near.

We didn’t sleep much that night. Waiting for a life-changing call is not conducive to a good night’s sleep.

Anyway, the place was nice. And we did not get a call in the night. The delivery suite called at 9:00 to ask me to go in to be induced after lunch that day, Tuesday. It was scary, but I was glad to have a time. We had a little walk around and enjoyed a snack at a coffee shop that was too ‘woke’ for us. But the food was good. Later, we had lunch at a lovely pancake/ waffle restaurant near the university.

It was a nice day out with a massive looming event that got closer every minute. Desperate to meet our baby boy that I was, the birth was something that I had been extremely worried about since the formal diagnosis in January.

I just couldn’t picture how I could have a calm natural birth when I knew that Samuel may well die in the first few minutes after birth. Having had two natural labours, I knew that my body could do it. My mind was the problem. If I could have left my brain at the hospital door before going in, I knew that I would probably be fine. But there you go. Brain-removal wasn’t an option.

After lunch, we made our way to the hospital. We sat in a soulless side room for a few hours, waiting for an induction room. This was the low point of the day: a mixture of boredom, discomfort and worry. Finally, a nurse came and spoke to us. She told us that she had arranged for us to go to a suite that is reserved for patients whose babies have died. Although windowless, it was a much nicer place to be. You could make your own drinks or toast in the kitchen, and had a small lounge area as well as a double bedroom and ensuite bathroom.

Samuel had been breech (bum down) the previous week, and had been easily turned. The doctor who turned him said that there was only a 5%  chance of him turning into the breech position again. I remember thinking that he probably would take that 5% and turn it into 100%. So I asked for a scan  before being induced. It is possible to give birth naturally with a breech baby, but there are risks. I couldn’t deal with any more risks.

The doctor brought the scanner to my suite. It confirmed that Samuel was not head-down and ready for birth. He wasn’t breech either; he was transverse, which means that he was lying sideways. Transverse position is dangerous for the baby and the mum, and you can’t have a natural labour because the baby would get stuck and/or suffer from cord prolapse, putting its life and its Mum’s life in danger. I was told that because of the risks, I wouldn’t be able to leave the hospital. Not really what I was hoping for!

I said that my worst fear about giving birth was that I would have an awful long labour, and then Samuel would die before being born. The obstetrician said that her worst fear was that I would have to have an emergency caesarean section involving a general anaesthetic (sometimes these are required), and then if Samuel didn’t live for long, I may sleep through his entire life,  only waking after he had died.

It was then that I realised that having a planned (and therefore calm and non-dramatic and less stressful) c-section was the best option. The doctor agreed, and she said that they would be able to do it first thing the following morning.

I felt peace as soon as the decision was made. I ‘knew’ that it would be a longer recovery for me, but also that a calm swift birth was the best thing for the start to Samuel’s short life. That said, I totally underestimated how painful a recovery from major abdominal surgery would be.

A kind nurse organised for us to sleep in the suite that night, which was a relief as otherwise Mike would have had an uncomfortable night trying to sleep in an armchair next to my bed, in a small sideroom. Usually the suite is only reserved for families post-birth. This was one of many examples of NHS employees going out of their way to get the best possible care for us, above and beyond their job description or pay scale. I hate to think how much all of my and Samuel’s care would have cost in a country like the US, where the medical system  seems to be ‘provide the best for the richest, and everyone else can sod off.’

I went into theatre as planned, at about 9:00 on Wednesday 1 May. The doctor and anaesthetist had already visited to introduce themselves to me, explain the procedure and answer any questions that I had. The room was full of doctors and nurses, and everyone was nice. A screen was placed across my chest to reduce infection risks, and also stop me and Mike from seeing my insides. I think that I would have enjoyed seeing my insides tbh; I find surgery fascinating. I was rolled slightly onto my left side, while on my back, prepped and anesthetised (by spinal block, similar to an epidural). I have since found out that the angle is so that the prolific waters, when the incision is made, flow out onto the less experienced doctor. The lead obstetrician stands on the drier right side of the patient.

I felt calm.

After a few minutes, the lead doctor took Samuel from the warmth and security of my womb into the loud, brightly lit world. The time was 9:59. Samuel was born. He gave a gentle cry.

He was handed to me, to lie across my chest for some skin-to-skin cuddles. I looked down at his squishy little face and smiled. I noticed that he was turning dark purple. Loads of froth started to pour out of his nose and mouth after only a few seconds. I knew then that he may well die, after only a very few minutes of life.

We had been warned by his cardiologist that he may live between a few minutes and a few weeks. There was no way of telling how long we would have with him.

He was whisked away. Our carciac nurse Jess, who has been amazing throughout, from when we first met her after my diagnosis, was in theatre too, at our request. She took some beautiful photos of Samuel being born, from the active side of the screen. She told us that she didn’t think Samuel would live for much longer. I tried to reconcile myself to this, while feeling extremely disappointed that it seemed our baby would never get to meet his brother and sister, this side of Heaven.

Two things that we were desperate to achieve during Samuel’s life was for our older kids to meet him, and for us to have a photograph of us together as a family of five. Other events were important too, like meeting his grandparents and getting to the hospice, but we knew that he may not live long enough to reach these goals.

It took about 10 minutes for the doctors to attempt to revive Samuel. I couldn’t see him, but the room was very quiet. Apparently he changed colour from  purple to blue to white during this time. I think that he was pretty much dead, or very close to it. I knew that he would have a tragically short life; I just wanted a little longer.

He was resuscitated and handed to Mike. He started to cough. This was a good thing, as it cleared his airways and allowed him to breathe more freely. After a while, he was given back to me to cuddle. I kissed him and said

“Hello Samuel, I am your Mummy.”

Soon after the doctors had finished sewing me up, we were taken to the recovery room. When a woman has a caesarean, she is given some time in the room with her baby, away from the busy maternity ward. Usually her partner isn’t allowed in there. This recovery room had space for two patient beds, with a curtain between them for privacy. The second bed had been cleared out, and a comfy sofa put there instead. There were drinks and snacks on hand. A plastic hospital cot sat in the corner, unnecessarily. Our children, Connor and Bethany were sitting on the sofa, waiting to meet their baby brother.

We got our much-wanted photo of our family of five. 🙂

Both sets of grandparents also got to visit and cuddle their youngest grandchild, as well as my sister Laura, who flew down from Scotland to meet her nephew.

We got many photos. The nurses were lovely and made us all teas and coffees. I was stuck in the bed of course, but the painkillers hadn’t worn off yet. We had lots of cuddles. Some friends from church visited. After the initial scare, Samuel was well and happy. It was a wonderful, peaceful day.

That night, after all visitors had left, we returned to our suite. A senior nurse who works in the neonatal ICU at the hospital, offered to come and sit with Samuel for a few hours after her 12 hour shift had finished, so that we could get some sleep. This is what the NHS runs on, the goodwill and kindness of staff who who stay after their shifts finish; who go out of their way to help; who don’t expect any financial benefit in return.

We got a few hours sleep, and my Mom arrived at 6:00 the next morning to help some more.

We were eager to get to Charlton Farm Hospice as soon as possible, so that Samuel’s entire life wouldn’t be in a hospital. We had visited it a couple of times when I was pregnant, and knew that it would be the perfect place for us to live as a family during Samuel’s life. It is an amazing place.

To be discharged from hospital, I had to show that I could get out of my bed, use the toilet and wash and dress myself.

So at about 8:30, a nurse came to encourage me to get up. I managed to shower and dress without any help, and then, feeling pleased with myself, set about busily packing our numerous bags and so on, naively forgetting that I had undergone major surgery only 24 hours before. I was to pay for that later.

Mike’s parents brought Connor and Bethany back for a visit, and Mike’s brother Phil came too. I was given the good news that I was going to be discharged soon after lunch. Soon, after a few more special visitors, Samuel and I headed off to the hospice in an ambulance, while Mike drove himself and met us there. I worried that Samuel would become ill or distressed during the journey, but he was fine in his little baby pod. We drove over the Clifton Suspension Bridge, which I thought was cool. Samuel was unimpressed.

Another big target achieved: we got to Charlton Farm. Samuel was 28 hours old and doing well.Samuel birth day and me

Advertisements

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.

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

 

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

 

 

 

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?