Scans, forms and more drugs

I had an MRI at the hospital today, ordered by my oncologist. I also have a CT scan on Wednesday. I will be getting these every three months or so, to keep an eye on the two cancer tumours in my spine.

This time, I knew what to expect so wasn’t worried. The room was much warmer though, so I was too hot and wished I could take my cardigan off soon after starting the MRI. It was quieter than last time, too. I closed my eyes (the head mask and machine are both very close to your face, so it’s better not to see them), and thought about the book that I’m currently reading (the 5th in a huge and beautifully- written series called The Wheel of Time); made up a poem about a leaf that I saw the other day; and recited Psalm 23. It was difficult to concentrate with the loud clunking and whirring noises, but I was quite relaxed.

I am starting on two new treatments soon, which is another reason for the scans. One of them is a bone-strengthening medication and one is touted as a ‘wonder drug’, a targeted therapy called Palbocyclib, which has shown good outcomes in patient trials.

Hopefully, it will keep the tumours from growing too fast and keep me going for longer. The list of side effects is not encouraging, though. It can cause anything from low immunity, to osteoporosis to DVTs.

The bone-strengthener can itself cause severe jaw problems, teeth falling out, and all sorts of other horrors.

I had to sign two scary consent forms for these drugs. But, they are the best treatment known to medical science to keep me alive for as long as possible, so what choice do I have?

The fact that I am managing so much better than expected and than last time, on the two treatments that I am currently on, does give me some hope. Last time, the drug that I was on had a 1 in 10000 chance of getting some rather evil side effects: I got them.

I hate it when doctors tell me that there is a small chance of something (bad) happening. I usually get that thing.

Thank you to everyone who is praying for no side effects, just good outcomes (i.e., my cancers shrinking.) Please continue to pray for me and my family?

I was woken by some awful burning pain across my whole back the other morning. It went away after an hour and strong painkillers. I went cheerfully about my day, but thought later that I should let my cancer nurse know that I had a new symptom. She phoned me back sounding panicked, and saying that she didn’t want to scare me, but that burning pain was a red flag for metistatic spinal cord compression (the scariest thing to me besides death). It is a nerve, not a muscular pain. I didn’t even know that it was a symptom: it’s not on my warning cancer card that I carry everywhere.

She said the next time that I get it, I need to the 24 hour hospital cancer Triage Line, even if it’s 2am and I feel better soon afterwards. It counts as an emergency and they may send an ambulance for me.

This feels more real now. It could happen at any time: probably in the middle of the night or when it’s very inconvenient. I have to try to stay calm while being prepared for a possible emergency situation that may involve spinal surgery or paralysis, when I least expect it. Great. I have now packed a hospital bag, just in case.

Cancer truly is the gift that keeps on giving. 😐

National Grief Awareness Week: my story

Care for the family, who have a bereaved parents’ group, lead by the lovely Mike and Kath, spoke to me about my experience as a pregnant Mum who knew that her baby would die, and grief after your child has died.

Alex’s story – A very short life

https://www.careforthefamily.org.uk/bereaved-parents/a-very-short-life

Thank you NHS

Samuel’s move to the hospice

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:

Donate to Charlton Farm Hospice

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.

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.