Back to 'Normal'

 

I had my latest cancer surgery just over 4 weeks ago.  They removed my gallbladder (which, apparently, you don’t miss) and a chunk of my liver; about 30% of it.  My (very wrong!) friend asked if they were going to eat it with some fava beans and a nice Chianti , but strangely this only grossed me out because I pictured a piece of nasty diseased liver on the plate, and not necessarily because it was a piece of my own human liver.  Which possibly makes me almost as wrong, I’m not sure!

This being my 4^th surgery in 3 years, I feel I’m a bit of a pro now in ‘what to do to get out of hospital quickly’.  I stayed in for four nights and then went to my mum’s to recover and isolate for 14 days.  I ended up staying a little bit longer due to another Covid swab and more self-isolating ahead of an arse-related appointment.  

  I am used to the indignity by now; there has been plenty of traffic through that particular route over the last few years since being diagnosed with bowel cancer. Actually, the correct term is colo-rectal cancer (of the colon and/or arsepipe – mine was on the cusp). 

Even with that tumour removed, I am in no sense back to normal in the arse department.  It’s a funny/not funny health condition. As my ex-mother-in-law quipped, it’s necessary to go through such indignities if my doctors are to get to the bottom of things.  (Ba-dum chshshhh…)  I’m often the butt of her jokes (Wa-wa-wa-waaaaa…) They actually tried to get to the bottom of things in 3 different ways, including sending little electric shocks up there, which I couldn’t feel… which might be a clue to what the actual problem is.  You see? No dignity left.  None.  I’m blogging about my rectum.  I bet they won’t want to print this one in Families Magazine. 

 So, anyway, before all that, I spent a couple of very relaxing weeks at my mum’s.  I love recovering there, it’s a bit like being on holiday, only better because I don’t have to do a thing.  We watched the news, snoozed a bit, drank endless cups of tea, indulged in those sleepy late afternoon gardening/heirloom mending programmes, followed by the quizzes. I listened to audiobooks while Mum cooked and did laundry and the washing-up.  Then we’d choose our evening viewing from the TV mag (how quaint!) and settle down to watch something murder-related (my choice, not Mum’s… don’t judge me!)  or maybe a documentary or another quiz.  She thrashed me at University Challenge 6-1.  I’m still smarting!

I’m back at my own place now, been back a couple of weeks.  It’s not quite as relaxing here.  I had thought I could rest during the day while my kids were at school, and I did so, for a few days.  But then Boo was sent home from school to self-isolate for 14 days as 2 people in her classes at school had tested positive for Covid 19.  A few days later she developed a cold but no Covid symptoms, and then a couple of days after that, she started with a bad cough and was hot to the touch. Ugh.  We got her booked in for a swab test the same morning and now await the results.  Unfortunately, we must all now self-isolate PROPERLY, meaning DO NOT LEAVE THE HOUSE.  Today is Day 2, and I feel so frustrated and bored!  Mum points out that she did it for 3 months in the Spring and survived.  I’m not sure whether the fact that I’m trapped in my house with 3 teenagers rather than all alone makes my plight worse or better.  Just for a moment I wished I was married, not to anyone in particular, just an adult my own age for company and to share the litter-picking.  Why can teenagers not use bins?  

 Boo seems a little better today, but still coughing the kind of cough which makes me want to fumigate her room. Her entire year group at school have been sent home due to more positive cases, so I am bracing myself for a positive result.  Poor Boo.  Thankfully these days she will take a couple of paracetamol, and blow her own nose.  But the sensory disruption of a runny and blocked nose appears to drive her crackers; she’s got through 2 boxes of tissues in as many days and half a pot of Vaseline for her sore nose.

 I have an oncology appointment next week, which, depending on Boo’s test result, I may not be able to go to.  Assuming she tests negative and I get to the appointment, I will find out what the plan is for my chemotherapy.  The doctor I spoke to at follow-up said there’s a possibility that oncology will recommend that I don’t have chemo, as the liver surgeon is confident he got all the cancer, didn’t find any more while he was in there, and the histology all looked good.  I should be pleased with that- it sounds positive, and who wants to have chemo during a pandemic?? 

The trouble is, I have been told before that they ‘got it all’ and I was given an ‘all clear’ result after my 1 year post op CT scan.  And yet, my colo-rectal cancer spread to my liver.  How could it spread if they got it all out?  When I asked how this was possible, the consultant explained to me that the cancer will have been there in my body the whole time, but would have just been too small to see on the CT at that stage.  When they said they had got it all, that meant they had taken out all they could see.  So I’m finding it hard to believe that this time will be any different.  There might still be miniscule little bits of cancer floating around in my body that no-one can detect yet, may not even be able to detect a year from now.  Having chemotherapy, to me, feels like an extra layer of protection against further spread down the line. 

I know there are no guarantees chemo will rid me of cancer forever, it puts me at a very high risk of becoming ill with infections and viruses, as it will knacker my immune system, and will undoubtedly make me feel like total shit… but it might buy me some more time.  I need much more time; I have a lot of things I want to do.

Serendipitously, Nurse Lynnie, a long time bestie and Lass, transferred to the Chemo Day Unit at the hospital just before I was re-diagnosed in August.  So if I do go down that route, I’ll be well looked after. I see many funny times ahead if that’s the case- she won’t let me go through all that without a few laughs!

But first things first, another day of self-isolating and waiting for Boo’s Covid test result.  Life just keeps on going, even when you’re poorly.  So I have to keep going too.  It’s been hard to do that over the past 24 hours; I’ve felt worried about Boo and annoyed to be stuck inside, and fed up of not being able to see my friends, same as everyone else. But the kids still need their tea, the washing still needs doing, the car insurance is about to run out.  When you are the single responsible adult in the family, the mental load can be immense sometimes. It isn’t strength that keeps me going, it’s necessity.  Thank goodness for necessity.

Drama Queen

 Last Thursday, I woke up early, having hardly slept due to the stifling summer heat, and was grateful that the air had cooled down overnight. I opened the curtains to enjoy the fresh damp of the dewy garden, then went downstairs, made myself a coffee and brought it back to bed, and it was only then that I realised it was Hospital Appointment Day.  I was all at once stopped in my tracks and sickened by that awful kicked-in-the-guts feeling you get, when you remember something you have been dreading.

After that, my whole getting ready routine was refracted through a strange and sad prism of imagined meaning- the shower didn’t immediately work; what did that mean? Was it a sign? More of my hair came out than usual when I washed it; was this a warning? A prediction? I knocked my favourite and sparkliest, rainbowiest dangly crystal down as I passed in front of the windows; why that crystal? What was the Universe trying to tell me?  In my heart, I felt a strong sense that I was living the last few hours and minutes of a sweet ‘before’, to which the ‘after’ would be forever bitter in comparison. It took me a few goes to find appropriate music to mark the occasion. SYML seemed the obvious choice, but instead I went for Radio 1, in case of further messages from God/the heavens. Bloody drama queen! 🤣 

On the way to the hospital, in the passenger seat of Mum’s Fiesta, a seat I only ever seem to sit in when I’m going to the hospital, I felt sick. A few days before, on the way for one of my scans, Mum’s car had begun to squeak again. It used to squeak all the time two years ago when she was driving me to my radiotherapy appointments, 5 days a week for 5 weeks. Even the car knows something’s wrong, I thought.  I began to weep, tears for fears. I felt actually terrified. 

Long story short, it went SO much better than I thought it was going to.  I can’t even describe the relief.  The bubbly consultant and his upbeat specialist nurse put us immediately at ease.  

“Well, the good news is, we can get it out,” he said matter-of-factly in a friendly Australian twang.  

“Ok, good. What’s the bad news?” I asked, feeling like my guts were about to drop out of my arse.

 “There isn’t any bad news,” said the nurse gently, with smiley eyes above her Covid mask.

“Do you want some bad news?” the consultant asked in mock surprise, “ahhhh... well, you’re going to need an operation, so that we can get it out. And some chemo to mop up any bits left over.”  I already knew this, so it didn’t feel like bad news at all.

That was it. Yes, I was given the usual info about risks of surgery, what could go wrong in the worst case scenario, the stuff they have to say.  But after that, a quick examination of my now no longer churning tummy, and I was free to go.  Back in the hospital foyer, I felt like I was walking on air, so much lighter than I’d felt half an hour ago.  I could tell Mum felt it too.

Back home, Peeka loitered while I told the Ex how things had gone, and my eyes locked with her scared dark chocolate ones.

 “It’s all ok, I just have to have another operation and some treatment, it’ll be just like last time, Daddy will stay with you while I’m in hospital.”

“Ok,” she said, taking it all in her stride, before returning to Project Diva, her latest obsession.

I went upstairs to see Boo in her new bedroom.  The night before, at bedtime, she had asked me to give her a hug.  She hates hugs with anyone apart from her Dad, who she idolises. She especially hates Mum-hugs.  But that night she was tearful and upset. I jumped at the chance for a cuddle and asked what was on her mind.  

“I’ve been thinking a lot about death,” she said.  

“Oh, Boo, have you been worrying about my death?”

“No, mine”, she answered with a wobble. “Do you think when we die we get reborn?”

“Nobody really knows what happens, apart from the people who have already died.  Some people believe ... ... ... .  2 minutes of my musings on death and beyond. 

“What do you hope happens when we die, Boo?”

“I hope I live on,” she said simply.

“I hope I do too,” I replied.

“Was it bad news?” she asked.  So often I assume she’s oblivious, not engaged, unconnected.  She is none of these things.  She feels very deeply, she just doesn’t show it very often.  I shared my news and she said, “Ok, can you go now?” A typical Boo response. I have my information, you can leave.

I popped my head around Pips’ door, and told her my news as briefly as I could. Pips isn’t into long conversations with me, unless she has initiated them. I treasure them, when they happen.  This wasn’t one of them.

“Epic,” she replied, and continued putting on her make up.

Everyone is ok, I thought to myself.

On Friday morning, I made myself a coffee and brought it back to bed. Things felt back to normal again. Life as usual. Life, with its ups and downs. I opened the windows and heard the noise from the road outside, and, in between cars, buses and lorries, the birdsong from the trees out the back. 

Happy Birthday to Boo!

It was Boo’s birthday earlier this week:  7 years of Boo on Planet Earth - in body if not in spirit!  She had a birthday party a couple of weeks ago, shared with Peeka, as their birthdays are about 4 weeks apart, and Boo only wanted to invite 3 friends.  ‘I only want my BFFs,’ she explained.  In the past I might have persuaded her to invite more people in the name of building social bridges, but I’ve come to feel that this has to work both ways in order to work at all, and Boo doesn’t get very many invitations.  So 3 BFFs it was, plus Peeka’s all-female band of beauties.  The girls enjoyed their party: Peeka made the most of her moment in the limelight and Boo just loved seeing her friends out of school, which happens rarely.  During Boo’s birthday song, as they brought in her cake with its 7 candles aflame, she let out a really loud and mischievous laugh, and when we had all finished singing, she shouted out, ‘I’m going to blow out them NOW!’  Those darn candles were tricky little things, and BFF#1 started blowing too, to help Boo get the job done.  Boo added, for clarification, ‘with a little support from [BFF]!’ which made us all chuckle.  What 7 year old uses the word ‘support’?!

On the day of her actual birthday, Boo was happy from the moment she woke up.  Days like these are so precious.  It’s not just because she is easier to manage when she’s in a good mood, though she really is, and the break from our daily battles and frustrations was, admittedly, most welcome!  No, the best thing about a happy Boo, for me, is the very knowing that she’s happy.  I spent most of Boo’s early years wondering what she was thinking, how she was feeling.  She was an enigma.  The extreme moods I could figure out, but unless she was very happy or very unhappy, I didn’t really know how to read her.  Now that she’s 7, I am beginning to get better at working out how she might be feeling, but she can still be a bit of a mystery to me and I get it wrong pretty often!

On her birthday, Boo was definitely happy.   I keep thinking about her birthday face and it makes me go all gooey-hearted.  She just couldn’t hide her delight.  She had no clue what her presents would be, because as much as I had tried to coax out of her what she would like, she gave me no inkling what to buy.  She had been asking repeatedly for a ‘Moshi Membership’ since her last one had run out about 3 weeks ago, and Grandad had volunteered to step in and make that happen, but nothing else had even been mentioned.  I’d just had to guess, and thankfully I guessed right.

At bedtime, the night before Boo’s birthday, she seemed pre-occupied, restless. This week at school, one of her classmates had tripped over another pupil and broken his arm, and Boo had been really shaken up by the sight of paramedics with stretchers and ‘medical stuff’ tending to him.  The whole class had obviously been really upset and concerned for their friend, and Boo’s support assistant reported that Boo had been particularly distressed by the incident.  I guessed that this was what was on her mind.  I snuggled up in bed with her and asked, ‘Y’ok Boo?’  No answer.  I thought I’d try to redirect her attention.  ‘Are you looking forward to being 7, Boo?’

‘Huuuuuuh,’ came her unhappy groan in reply; a pained, anxious expression on her face.  Her eyes began to fill up with tears. 

‘Are you worried about something?’ I asked, tentatively, because usually when Boo is upset, the last thing she wants to do is talk to me about it, and me asking about it is often met with angry shouting through gnashing teeth.  After a long pause, she turned to me, wide-eyed and fragile.

‘I’m worried that I won’t like my presents,’ wailed Boo.  At that moment, I got it.  We had been banging on about her birthday all week (her sisters for a lot longer than that!) because we were excited for her, but what we had actually done was put pressure on her, we’d made it too big of a deal.  She was anxious.  And, those birthday packages could contain anything!

‘Don’t worry Boo,’ I said, stroking her forehead.  If you don’t like your presents you don’t have to keep them.  You can swap them for something you do like.  She looked relieved, smiled at me and said,

‘You can go away now.’ 

So I did.

 The next morning, 6.20am came, and in lolloped Boo, quietly squeaking, ‘It’s my birthday…are those my presents?!’  She got straight to work, flanked by her inquisitive sisters, who were impatiently nudging her to get on with opening the next, and the next.  I love the way Boo opens presents.  She tears into the wrapping paper urgently then takes a few seconds to examine the contents.  She isn’t bothered by the social graces of gift-acceptance; if she doesn’t like it, she just sets it aside and moves on.  If she does like it, then time stands still, we must p-a-u-s-e.  She takes her time to study all the intricacies of the given thing, turning it over in her hands slowly, reading everything printed on the packaging.  If it’s a book, then she sets about reading it, there and then.  This makes her sisters very twitchy- they are too eager to see what else hides in pretty paper and get ripping!  Boo takes her own sweet time.  So, with this in mind, I saved about half Boo’s presents for her to open after school – we have enough trouble getting there on time as it is!  The big hit of the morning gift-opening session was a ‘My Little Pony’ Wedding Castle (they have boy-ponies now, you know!) complete with bride and groom.  She loved it so much that bride and groom had to accompany Boo to school, to be shown and told.

I knew that the fat envelope containing Grandad’s card and the longed-for Moshi Membership had to stay hidden until the end of the day, when all the gifts had been opened, the birthday tea eaten, the candles blown out and the cake shared.  There was no way we’d get through any of those traditions if Boo got her hands on that envelope – she would be glued to the computer and parting her from it would be messy.  In fact, to avoid the messiness, I had decided to keep quiet about it until the next morning, but then I cracked.  She asked and asked and I hated to see her disappointed puppy-face, so I told her that Grandad had sent the very thing she wanted, and she could play on her computer game first thing in the morning.  But Boo had to see it for herself.  I brought the card up for her to open and she was over the moon.  We talked about our rules for waking up (stay in your own bed except if you need the toilet, try to go back to sleep if it’s before 6am, if you can’t sleep you can read, no DS or other gadgets before 6am, no computer before 6am) and said goodnight.

That night was a rough night, with Peeka, mainly.  All the girls have had snotty colds and coughs this week – Pips had had the day off school after being up most of the previous night with a high temperature and a persistent bark.  So there were various gettings-up to sprinkle Olbas oil on pillows, blow noses, administer medicine and refill bottles of water.  Peeka woke us up with her thoroughly miserable crying a couple of times so Mr BooHoo had gone to her and fallen asleep next to her in her single bed (oof).  He woke up in agony, welded to the sharp edge of the bed-frame, at about 3am, and was shuffling back to our room when he saw that Boo’s light was on.  

He peeped around her door and found… no Boo.  Her new 250 piece jigsaw puzzle had been opened and completed -it was displayed proudly in the centre of her bedroom floor- but Boo herself was nowhere to be seen.  Then he heard music from downstairs, and upon investigation, he found Boo, sat at the computer, playing Moshi flippin’ Monsters.  He turned it off and frogmarched Boo back up the stairs.  This was when I woke up.  What a racket.  Boo was not even slightly amused that her fun had been so abruptly curtailed and the two of them were having a very loud argument about it.  It took me half an hour to talk her down from possibly the angriest I have ever seen her, to a point where she could be calmly unhappy.  I lay next to her and rubbed her tummy until she stopped crying.  I woke up about an hour and a half later, aching all over from lying right on the edge of the bed with Boo’s feet on my legs, and staggered stiffly back to my own bed.   

We managed to lie in until 8.30 after all the comings and goings in the night – for a change, the kids were as exhausted as we were!   Boo struggled to wake up, having missed so much sleep, but when kisses and sunshine streaming in through her window failed to rouse her, all I had to do was whisper in her ear, ‘If you get up now and have some breakfast, you can play on the computer afterwards,’ and she was out of bed like a shot! 

Funny Boo. 

Melatonin and Monobrows

 Ah, bedtime!

  

Clean, freshly bathed children,

Tummies full of warm milk,  

Quiet-calm snuggle stories,

Low moon-glow, soft music,

Fluffy blankets tucked under chins.

Kisses on foreheads,

Blankies to lips.

Thumbs in, lids drooping,

Limbs heavy, falling in.

She’s going now, gently drifting

Angel breaths, sleep-sighing,

A dream’s whisper,

Finally… a-s-l-e-e-p.

‘MUMMY, WAKE UP!  YOU’RE SNORING.’

 Oh Crap.  Yes, come bedtime in this household, the only one likely to fall asleep as soon as their head hits the pillow, is me.   But not for long.  As I’ve written about in previous posts, bedtime is not straightforward in our family (or, I suspect, in many families living with Autism.)  None of my girls are great sleepers, but we are working on it, and making a little progress.

Originally, when Boo’s fabulous paediatrician asked us if we’d like to try giving Boo some supplementary melatonin to help her to fall asleep, we balked at the idea.  It just felt plain wrong.  I think lots of parents would feel as we did initially – the thought of ‘drugging up’ our child so she would sleep just made us feel uneasy. And then there was always that niggle… that if were ‘good enough’ parents, then we should be able to fix this, on our own.  So we declined.

But six more months of not eating an evening meal together (or spending ANY adults only time together, actually) began to wear us down.  Six more months of running up and down the stairs to deal with whatever mess Boo had got herself into- spilt water, blankie-out-the-window, PJs off and un-put-back-on-able, or (gag) the dreaded poo-paintings- all of it just broke us, and on the next visit to the paediatrician, we said, ‘Tell us more about this melatonin.’

Melatonin is a naturally occurring hormone which is produced by the body to cause drowsiness.  Many people with Autism have low levels of melatonin which may partly explain why they are more prone to sleep problems.  The body’s own melatonin production can be supplemented by using two types of medicinal melatonin:  short-acting  (to aid the onset of sleep), and long-acting (to maintain/prolong sleep).  Dr. J. began by prescribing the smallest possible dose of short-acting melatonin, to help Boo to fall asleep.  When we asked if there were any problems or side effects to look out for, she told us that the most common problem with melatonin is that it doesn’t always work.  (It is common for some children with Autism to receive the maximum dose and still not be able to sleep.)  That first time, having guzzled down her bedtime milk (with the contents of the tiny melatonin capsule sprinkled and stirred in), I was pretty taken aback when Boo’s eyes began to get droopy about 20 minutes later.  She actually asked to go to bed, and was out like a light.  We got her sisters in bed and, without the usual fuss and bother coming from Boo’s room, they found it easier to fall asleep too.  Mr BooHoo and I had eaten our evening meal by 8.30, totally undisturbed, and didn’t know what to do with ourselves!  ‘So this is what the evening feels like for everyone else!’ he remarked.  I think we even got through a whole movie, feeling very decadent.

For a while, all was well at bedtime and overnight, but after a few weeks we began to notice that Boo was finding it more and more difficult to fall asleep.  Had her body become desensitised to the sleepy stuff?  Dr. T. prescribed an increased dose, just 1mg more of melatonin.  This did the trick, and peace was restored again.  But a few months later, Boo began to wake up too early and was soon rising before 4am on a daily basis.  At our next visit to the paediatrician, she prescribed a small dose of long-acting melatonin, a slow-release form which would help to keep Boo asleep for longer.  Again, this worked a treat, but only for a few weeks!  Today, we are still trying to get the balance right; we regularly need to ask the paediatrician to tweak the doses of the two types of melatonin, in order to help Boo fall asleep and stay asleep using the smallest dose necessary for her.    

We really notice a difference in Boo’s behaviour when she hasn’t slept well.  Her concentration is nowhere near as good; her attention tends to wander or become fixed on something random.  She’s elsewhere, not with us at all.  Trying to get Boo to do anything (such as put on coat and shoes for school) when she is in this frame of mind is like trying to guide a large goat through a maze.  Conversation is impossible- she won’t listen (yet I’m sure she hears), she doesn’t answer; there is no persuading or reasoning with her.  It’s as if Boo just ‘shuts down’ this whole section of herself, to conserve energy.  And then sometimes, she is very capable of communicating, but seems stressed, unable to cope.  She becomes upset or angry much more quickly, is less likely to co-operate -and she can be VERY stubborn.  At home she can be quite aggressive towards us and lashes out, out of desperation – it all just gets too much for her.  We make sure we let school know if Boo has had a bad night, because although she is generally fine at school in the morning after very little sleep, her teachers report that her mood, behaviour and concentration deteriorate noticeably in the afternoon.

At the moment we are going through a bad patch, sleepwise – Boo is waking early again (around 4am most mornings) but also struggling to fall asleep at bedtime.  Now that she’s older, rather than nappy-antics (thank goodness!) she likes to read, sing, play or draw.  Singing and playing at bedtime are not allowed because she keeps her sisters awake, but if she’s reading or drawing, we tend to let her continue until she decides she’s tired.  If she‘s not disturbing anyone, we can go downstairs and eat.  The other night, an good hour after finishing our steak and chips, we heard a blood curdling cry from Boo’s room.  

‘HELP!  HELP ME PLEEEEEEASE!’

I dashed upstairs to find Boo in tears, looking frightened.  I slid into bed beside her and wrapped her up in my arms.

‘What’s wrong, Boo?’

‘I’ve got fur on my face and it won’t come off!’ she wailed.   

She was scratching furiously at the space between her eyebrows.  (Well - to be fair, in our family we are not blessed with much of a space there!)  I wanted to laugh but she looked so forlorn that I could only hug her, and explain;

‘Oh that’s ok, Boo – it’s not fur, it’s just part of your eyebrows and it’s supposed to be there.’ 

 She turned on her bedside light and peered at my face, stroking my tidy eyebrows and prodding the bare space in between (courtesy of Vanessa at Fine Fettle Beauty who had whipped off my ‘fur’ a couple of days before!)

‘You haven’t got fur there,’ Boo remarked.  

‘No, Vanessa takes my eyebrow fur off for me at her salon,’ I replied.

‘Will she take mine off for me?’

‘Maybe one day, when you’re grown up.  Kids are supposed to have eyebrow fur but sometimes grown up ladies take it off to make their faces look tidier.’  Boo looked satisfied with that, turned off her light, rolled over and put her thumb in.  I said 'night night’, kissed her forehead, and left.

At 4.30 the next morning, I shuffled blearily into her room to give her her DS, as she had begun to sing and play noisily and I wanted to give her a quiet activity to do.  I noticed dry blood on her pillow and on her fingers, forehead and nose.   ‘What happened here?’ I asked her, although I knew as soon as I saw it.  She had scratched away all the skin just above the bridge of her nose.  

‘I didn’t want fur,’ she whispered, and added, ‘it was untidy.’

Boo's Autism prevented her from realising that the consequence of removing her brow ‘fur’ would be a sore-looking red scab in the middle of her face, which was far more unsightly than a little bit of cute monobrow fluff.  Thankfully, it healed well and she just has a little scar there now.  It’s a worry, though.  When a nearly-seven year old is prepared to bleed for the sake of facial tidiness, that’s a problem.  But it’s a problem that probably wouldn’t have happened if Boo had been asleep that night, instead of wide awake with her mind turning over.  Time to email Dr.J. again.  We will get this right, one of these days.  And hopefully before Boo discovers what some grown up ladies do about leg fur.  Or worse :-0