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.

New Scribblings

 

It’s been 3 years since I last posted to this blog.  Life has kept me entertained, or in any event, busy.

The girls are growing up fast. Pips 16, Boo 14, Peeka 12.  They are fantastic, funny, quirky, sometimes grumpy and mean, downright savage at times!  But mostly they are brilliant, intelligent, wise and beautiful young people.  Having become used to being a predominantly single woman and predominantly single parent for the past 5 years, with the girls’ dad 200 miles away and very quickly with someone else, I have settled into a different kind of motherhood, letting go of any hope that I will ever be perfect at this job; not even trying to be be perfect, and being ok with that.  It’s very freeing, but my house is even messier.  I don’t care unless people are coming over (excluding my close people, most of whom don’t care either.)

There have been both significant and insignificant other men in my life since the separation, but I’ve not been ready for anything so serious as meeting their parents or moving in together- I feel I have enough on with the life I already have, and I know my girls would struggle with sharing their home.  Let’s be honest – I would struggle with sharing our home.  It’s a struggle to share it with my own kids, frequently!  But I have gained a couple of male friends whose company I really treasure.  And even the Ex, for all his infuriating faults, is still a friend of sorts. 

My friends are awesome.  The Lasses -firm friends since Sixth Form- are hilarious and real.  I love these women.  Months, years can go by and they don’t change any of the things I love about them, but their spirits evolve into shapes and stories I find even more interesting and complex and side-splittingly funny.  In fact, all my friends are real and funny and wise, and nothing like me and just like me, and nothing like each other, but somehow all kind of cut from the same cloth, in different colours and patterns.   I feel really blessed that I have any friends, frankly, since I’d much rather hole up on my own, never encountering another soul, given the chance.  I’m an antisocial sod.  Except when I feel like being sociable, then I can do it for a bit, and have the best time! But I'm easily peopled-out, and then I have to retreat to the sanctuary of my loner-lair.

My parents are precious to me.  My mum and dad have seen me through some horrible times.  Dad with his easy, calm nature has been a rock, always there when I need him and also a big help in the garden and with DIY.  Mum… more of a lifeboat than a rock; riding the boiling seas with me, going with me through everything I have gone through, but feeling worse, I suspect.  Because while I was being floaty and positive and choosing not to deal with things sometimes, she took it all on; the worry, the stress, the terrible what-ifs.

Even though, usually, I feel fine and strong and vital, energised by the simple joys of life, my health has been a bit shit. There was the whole bowel cancer thing a couple of years ago; I might write more about it sometime.  But in a nutshell: the late diagnosis, the emergency stoma surgery, chemo-radiotherapy, premature menopause, more major surgery, infections (then doing a counselling placement, a load of coursework and finally completing my Counselling Diploma!), then a stoma reversal surgery which has left me with LARS, Lower Anterior Resection Syndrome – meaning I often shit myself with no warning, so I have to wear nappies – sexy. 

We moved house nearly 2 weeks ago, back into what was the family home once upon a time.  It had been mostly unlived-in for 5 years and was in a sad and sorry state.  One year, a very generous financial gift from the ex-in-laws, and a LOT of hard work later, and it’s looking like a home again.  A new home, for us now. We all have our own bedrooms now and there is a lot more space.  It’s so much easier to relax when you don’t have to share the one quiet place in the house with 2 washing racks, a computer and a huge box of mail to be sorted and filed.  I got the loft converted and now I have my dream bedroom, looking over the trees and houses.  I’ve been waking up feeling very smug and happy.

But, as I said to a friend recently, life doesn’t let you be smug for long.   I found out last week that my cancer has returned, in my liver this time.  I’ve scared myself silly by Googling survival statistics for secondary liver cancer.  But my doctors are being very positive about removing the 8cm tumour and blasting any leftover bits with chemo.  So I’m feeling hopeful that they can sort me out.

Faced with my own mortality in a way that didn’t really register last time, I’ve decided to write about my life again, just in case there is less of it left than I hoped for.  Sometimes I might feel profound  and inspired.  Sometimes I might just want to indulge myself.  And sometimes I might want to share a picture of my tea, review some cheese, or complain.  Maybe I won’t feel like writing again.  I don’t know.

Yesterday I did some gardening at my new house with my mum. Mum trimmed and lopped and I hacked, chopped and battered.  Then we sat in the shade of (half) an oak tree and watched the birds flitting around; it was very peaceful.

These are my legs and my wellies.  Enjoy.

 

Super Siblings (Part 2)

Pips, my eldest daughter, like many other first-born children, lived her first couple of years as an only child, hearing ‘Yes’.  Yes, we can go to feed the ducks.  Yes, we’ll paint pictures today.  Yes, we can go out for lunch.   Yes, yes, yes.  Whatever she wanted to do, the answer was usually the one she wanted to hear, because truly, there was no reason at all to say no.  It was just the two of us (when Daddy was at work) and a multitude of people to visit and places to go and things to do.  When we moved to the USA, our wings were clipped somewhat, not knowing many people to visit or places to go or things to do, but even so, it was just us two, and in our little bubble, we were everything to each other.  My whole world (inside that bubble) was about keeping my little girl healthy and happy, and so my answer to her many requests was pretty much always a ‘YES’.

Enter little sister Boo.  Suddenly, Pips had to get used to hearing the word ‘no’.  No, we can’t go out right now.  No, we can’t paint.  No, I can’t do a puzzle with you.  No, no, no.

I myself am a first-born child.  I can remember distinctly the day in 1975 that my little brother was born, at home, when I was two and a half years old.  I can remember hearing strange noises from upstairs, and when I went upstairs to investigate, I remember feeling a little lost and put-out that Nanna told me to go back downstairs and watch Playschool.  There is a photo, taken when my brother was just a couple of days old, which shows EXACTLY how I felt about having to share my Mum.

Poor little me, little girl lost.  I remember it clearly.  So I can understand why lots of kids struggle when they suddenly become a big brother or sister.  They are used to being the centre of the universe and then, BOOM, it’s all over.  I get it.  I think I spent most of my childhood feeling like life wasn’t fair.  I was convinced that my brother was the family favourite.  To say that I resented him at times, would be putting it mildly.  Interfering with my games.  Playing with my toys.  Messing up my stuff.  Being all cute and adorable whenever any adults were around, then spawn of Satan when they weren’t.  Ack.  But then, there were times I quite liked him too.

Pips’ early experiences of being usurped from her comfortable role as ‘One and only baby of the family’, were not all that different to mine.  There was some resistance.  There was denial.  There was flat-out refusal to accept it.  But eventually, the pieces of our lives which had all been thrown up into the air when Boo arrived, came floating down and landed in their new places.  All was well for a year or so.  Nothing much out of the ordinary to report.  Life with a baby and a toddler is not a piece of cake for anyone, but we did our best and we were fine.  We even decided to have another baby.  Life was good.  Relaxed, even.

Then it all changed.

Boo’s paediatrician had referred her to Early Intervention Services at 12 months.  Shortly after, she started receiving weekly physiotherapy at home (which involved putting Cheerios up the stairs and making Boo try to crawl up to eat them!)  I believed the intervention was unnecessary and ridiculous – that Boo would do things at her own pace in her own good time, (and she did, but little did I know how much time it would take!)  These sessions were just the beginning in a very long string of professional visitors to our home over the following years, including speech therapists, a specialist health visitor, play therapists, a clinical psychologist, occupational therapists, educational psychologist, officials from the education department, the school nurse… and many others whose roles or official titles I can’t remember.  Looking at it from Pips’ point of view, there always seemed to be someone coming round to see her sister.  Very early on in the process of Boo being assessed for a diagnosis, Pips asked me, ‘Why does nobody ever come to see me?’, and my heart broke a little for her.

 In those early years leading up to and after diagnosis, keeping Boo’s appointments felt like a full-time job.  Thank heavens for Early Intervention -professional help arrived from every angle you can imagine- but OMG it was exhausting!  Seriously.  If I’d had a job at that time, I would never have had the time to go there and do it.  Life as we knew it had gradually been taken over by this new way of life which was all about Boo.  Baby Peeka had been born into it and had never known any other way of life, but guess who was feeling a little pushed out, invisible, unimportant, insignificant, unloved? 

 Of course, I could see how Pips was feeling.  I honestly did my very best to compensate her in the midst of the madness.  I can truthfully say, that in terms of quality, focused one-to-one time, Pips has had more of this over the years than either of her sisters, because she has consistently needed and demanded it, (in a way that her sisters rarely have.)  But now that Pips is 9 years old, I have realised that it really doesn’t matter how much time, energy and attention I think I have given her; her perception (which is absolutely real and true to her) is that she has never had enough of it. 

Having a sister with Autism has affected Pips in many ways, and so as not to be guilty of gross parental overshare, I will just say that there have been struggles and there has been anger.  Pips has suffered several problems that have not been an issue for Peeka, who has never known any other way of life, and at 5 years old, isn’t quite aware of what others see when they look at her sister.  For Pips though, she is very aware, and isn’t quite sure which side of the fence she belongs on, theirs or ours.  At school, Pips is often embarrassed by the odd things that Boo does, when other kids notice.  Sometimes it’s hard not to notice.  Occasionally Pips has been teased at school about her ‘weird’ sister.  She doesn’t know whether to disown Boo or protect her.  She is angry at Boo (for behaving in a way which draws attention) and yet also angry that anyone would be so mean about her sister.

At home, we have grown to enjoy Boo’s ‘oddities’.  They make us laugh, but we don’t laugh at her – the laughter comes from a place of love and pure joy.  Pips laughs too, and will often ask me during our bedtime cuddle, ‘Have my sisters done anything funny today?’  But then at other times, she resents Boo’s quirkiness and is reluctant to see anything positive about her unusual behaviours, which she often calls ‘stupid’. 

‘I wish I was Autistic!’ Pips will cry out, when Boo gets to go to fun events, like a monthly club for local kids with disabilities, and a fabulous SEN playscheme for parts of the school holidays.  These are quality services where Boo can spend time with other kids who are different, like her.  When Boo is out we can do things with Pips and Peeka that we wouldn’t usually be able to do if Boo was with us; things Boo wouldn’t enjoy or cope well with.

Last night, cuddling at bedtime, I mentioned to Pips that I was writing this post about her, and asked what she thought were the best things and the worst things about having a sister with Autism.  There were no best things.  There were lots of worst things:

•   Boo takes what she wants from my room and ruins everything.  It’s not fair!  (It really isn’t.  We’ve even talked about putting a keypad on her bedroom door to keep Boo out.)

•   There is one set of rules for me and another for Boo.  And another for Peeka (True. That’s the way it has to be, because our expectations of each child reflect their age and level of understanding.) 

•   Boo hogs the computer. (True)

•   She makes mess.  (True)

•   She eats noisily.  (True)

•   She talks about Moshi Monsters all the time.  (True)

•   She tells the same jokes over and over again.  (True)

•   She ignores me when I ask her a question.  (98% true)

•   She chews my things.  (True)

•   She is annoying.  (Sometimes true)

After hearing her list of complaints, I gave her a big hug.  I didn’t really know what else to do.  Living with a sister with Autism is not easy.  Pips finds it very, very difficult.  And then she turned to me and said sadly, ‘If she wasn’t Autistic, she’d be my best friend.’

I think that means she loves her to bits.  At least, sometimes.   
I hope that one day, when she's older, Pips will realise that Autism can't stop them being best friends if they want to be.  

Pips' journey with her sister's Autism has been rough so far, and may get worse before it gets better, but just imagine the strength of spirit she will have built up by the time she reaches adulthood.  She will have spent her life overcoming daily frustrations, practising patience and learning acceptance of the differences of others.  She'll make an awesome best friend.  Queue forms here.