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.
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?
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.
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
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.
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.
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.
Everyone is understandably feeling anxious right now. This is a world pandemic. Many people are ill and have died. Many more fall ill and die. It’s a scary time.
Our youngest son Samuel was diagnosed with an unfixable congenital heart defect when I was 20 weeks pregnant, in December 2018. He was born on 1 May 2019.
We had a lovely first day with Samuel and some close family and friends. I was still confined to a bed, having had a planned c-section. That night, a fabulous senior nurse offered to hold Samuel for a few hours, after her long shift, so that Mike and I could get some sleep. I wasn’t able to get out of bed yet, so couldn’t pick Samuel up from his cot or change his nappy. Mike and I were staying in a suite that we had to ourselves, with a lounge, kitchenette, double bedroom and en-suite. It is tucked away from the delivery suite, and used for families who have lost their baby during or soon after labour.
After the nurse had gone, Mike had been sitting in the lounge for a while, and was knackered. I said that I could hold him for a while, so that Mike could get some more sleep. I didn’t think that it would be for long, as I couldn’t walk him round the room, make up a bottle, or anything like that. I think it was about 2 hours in the end, that I held him. He was so settled, that although he was awake a lot of that time, he didn’t cry once. He just seemed to peaceful. Anyone who knows me, knows that this would have been a very different experience for me after my two older kids! I never knew that a newborn could be so content.
At about 5:30 that morning, I texted my Mom, who was staying with Dad and my sister Laura a few minutes away. I asked her if she could come round soon to help with Samuel. About half and hour later she was there.
A nurse came to our room soon after breakfast and said that she was going to remove my catheter, and I needed to get up and have a shower. They wanted me to be able to be discharged as soon as possible, so that we could get Samuel to the hospice. We wanted to make some memories with him, without his whole life being lived in a hospital. The average time to stay in hospital is 3-4 days after a cesarian section.
I had a shower and got dressed without any help. I was very proud of myself. It was painful, but managable. I hadn’t realised that my painkillers from the day before hadn’t worn off yet. I was discharged soon after lunch.
Samuel and I were being transported by the ambulance, so we said goodbye to Mike at the ambulance door, and climbed in the back with a paramedic and a nurse from the hospital. Samuel was in a little baby pod, which they use for transporting little ones. He seemed quite happy for his first and last journey by car. We went over the Clifton Suspension Bridge, which gives great views over Bristol. It was the first time on that bridge for both of us. Soon we arrived at Charlton Farm Hospice. Mike was already there.
The hospice is a precious place, set in countryside outside of Bristol, and just what families need who have a child with serious illness or disabilitiy and a short life expectancy. The nurses, (well) sibling team, volunteers, food, bedrooms, garden and communal areas are just amazing. It really was the lovliest place for us as a family to live for Samuel’s short but sweet life. It is a charity, set up by a couple called Eddie and Jill Farwell, who had two children with life-limiting illnesses.
Here is a link if you would like to donate directly to Charlton Farm, in memory of Samuel:
We unpacked our bags in the family accommodation upstairs; bustled around the huge estate, met some staff and said hello again to others we had already met, and introduced them to Samuel. Connor and Bethany arrived, as well as our parents, and siblings Laura, Phil, Vince and Anna. And then my body decided that enough was enough. I was in so much pain that I could only curl up in a ball in a chair and whimper. It’s a bit of a blur, but the nurses were great and I got painkillers soon enough. My family enjoyed the privilege of changing Samuel’s nappy as a team task.
Our friends Ryo and James visited us that night. We wanted as many people as possible to visit him, so that they would have memories too. Later, Samuel went a little blue and I thought that he was going to go downhill fast. I was relieved that we had been able to spend a day with him at the hospice, but it felt too soon. He started to get better after a while though, thankfully.
That night was hard: Mike, me, Connor and Bethany were sleeping upstairs, while Samuel was in the poorly kids’ accomodation downstairs.
Every ill child has a large room with en-suite bathroom downstairs. The rooms have CCTV, which is monitored by at least two nurses all through the night, in a comfy area called the Meadow. They are on hand to make sure that the children are looked after while their families get some much-needed rest. For many parents of disabled children, the respite care offered by the hospice is more valauble than gold. It’s the only time they get to sleep through the night, have a stress-free meal, and spend quality time with their well children. The parents can watch a movie in the cinema room without constantly worrying about their child. The siblings can have fun going out on day trips or doing art with the sibling team, while the disabled child is cared for. I can see how it must be a precious thing for every family who has a child with a life-limiting condition.
Anyway, the reality of having had major abdominal surgery the day before, and then rushing around all day pretending that it was ‘just a scratch’ hit home that night. Trying to get out of bed to go to the toilet in the middle of the night was agony. I needed Mike to help me, but didn’t want to wake him up. A couple of hours later, I did anyway as I had a panic and needed to see Samuel right away. I wasn’t physically strong enough to walk all the way downstairs by myself, and knew that I would collapse in pain if I did. So I woke Mike up, feeling pretty guilty. We knew that the kids were safe, so we went to Meadow to visit our baby.
He was happy, with four nurses seeing to his every wish and taking turns to hold and feed him. He was treated like a little prince: everyone wanted a cuddle. I sat with him for a while, gazing at his gorgeous face and watching him practise his facial expressions. He especially liked to pout. A nurse made me a hot chocolate and gave me a biscuit. I felt much better.
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.