Leap Day

 Leap Day

I’ve been feeling pretty fed up with myself lately. Can’t wake up in the morning. Don’t want to get out of bed, I’m so tired. Everything hurts. Headaches nearly every day. No energy. No motivation. Can’t be arsed to go for a walk. Can’t be arsed to make anything healthy to eat. Can’t be arsed to even take my multivitamins, even when I’ve got them out ready. Feels a bit like I remember depression feeling, all those years ago. Except, I’m not sad, I very much want to live my life and I have loads to look forward to. I just can’t bring myself to do the things I need to do in order to feel better. 

Life has been very stressful over the last few months. My parenting duties are waaaay over and above what I expected them to be at this stage; my girls need a lot of extra support from me and while I’m more than happy to provide it, it leaves very little time when I can prioritise my well-being or even just actually leave my house. I haven’t been able to get out for walks, and hadn’t really realised until recently how much I need to spend time in the fresh air, get away in the open by myself, hear birdsong and the breeze in the trees. I’ve been sitting a lot, staying up too late, watching too many murder programmes and overeating whatever is quick and easy to lay my hands on. This is usually what happens when I stop caring about myself. 

Guess what happens when you regularly don’t do the little things you need to do to take care of yourself? You start to feel shit.  Your body starts to feel crap and your mind starts to work against you, affecting mood, motivation, self-worth, and your belief in yourself to accomplish anything worthwhile.

Super-friend Katie let me whinge and whine about all this to her today. “You’ve got to look after yourself too”, she reminded me. Then my lovely man Christopher listened to me moaning and gave me a cuddle and a pep talk. He showed me a story online about a 25 year old woman who, shortly before succumbing to a rare and aggressive cancer, wrote her advice for living, which was shared by her family after her death. 

https://www.leeds-live.co.uk/news/leeds-news/leeds-woman-announces-death-heart-28723999

A couple of hours later, in my 1-2 hour window of freedom, I made myself go for a 10 minute walk, then decided to buy vegetables. I made a nice salad and really enjoyed eating it. 

What are my takeaways from today? 

1. I feel really rubbish when I don’t give my body what it needs: quality food, good sleep, regular exercise, plenty of water. 

2. When my body feels bad, my mind soon follows, with negative thoughts and self-sabotaging behaviour.

3. When I feel like I can’t do anything, I actually can.    I can take one tiny step in the right direction.  Sometimes this looks like self-compassion (give yourself a break, you’re doing the best you can in this moment) and sometimes it looks like a kick up the arse (just start!) 

4. One small action, even if it’s a drop in the ocean, is going to make me feel better than doing nothing. 

5. Life is precious. You never know how long you will have on this earth, so don’t waste the time you have feeling crap and useless. Everyone deserves a life they can enjoy, but it won’t just land in your lap. Go get it. 

I’m writing this today because I want to be accountable to myself. It’s leap day today, and by the time the next leap day comes around in 2028, I want to be in a better place (health and wellbeing-wise) than I am today. That seems doable, doesn’t it? 

Crackerjack

 It has been several months since my last confession. This is a long one so you might want to have a wee first.

I left you all hanging with Let’s DO This!!! Or at least, someone wrote that. The person who wrote that was not me, not as I am today. If that daft cow had walked up to me last week, I would have slapped her. She has made the last few weeks very hard for me. Her expectation that I would get through the treatment and want to go out and buy party shoes and celebrate could not be further from what actually happened.

What actually happened, was that I made it to the end of the treatment. That’s it. Nothing more exciting. No need for fireworks or fanfare. It was a huge anti-climax. I couldn’t have cared less. I was DONE with cancer, I felt utterly exhausted. I wanted to sleep for a year. There had been days since the final chemo treatment when I felt too weak to stand up, let alone go shoe-shopping. I often felt too sick to eat (and anyone who knows me knows that never happens.) Days and days when I felt it might have been kinder to just shoot me. All I can say is that I made it to the end, but not necessarily in one piece.

After the first treatment I just felt so ill that I could hardly lift my head off the pillow, I really wasn’t capable of cooking, doing laundry, doing anything.  Then the dishwasher broke and the kitchen ceiling began to leak from the bathroom above... I lasted 4 days before I had to admit defeat and ask the girls’ dad to look after them. When I’d finished the first course of chemo tablets, it took me a day or two to feel better. Then I woke up with the shits (a common side effect of the meds) and I don’t want to brag but these shits were relentless and epic, even for me. So much so, I ended up in hospital for 6 days, starved of all but Dioralyte and off my tits on enough drugs to bring a rhino down. To make sure I was well enough for the next treatment, they delayed it by a couple of weeks, which gave me the chance to bounce back- I felt well and almost normal, just with less energy. 

Treatment 2 was a week before Christmas, and didn’t seem to knock me out as much as the first one. Given how bad I’d felt, the oncologist decided to slightly reduce the dose of my chemo treatment and tablets. I still felt awful, but it didn’t last as long. I felt fairly well for Christmas, although it was a VERY quiet one for us all; no fuss and no pressure, which actually was just what we all needed, even the kids.

Treatment 3 was a couple of weeks after Christmas, and I felt just dreadful. The tingling in my arm (another common side effect) was still really bad even though they diluted the chemo with something else to lessen the discomfort. It didn’t really work. I kept forgetting how sensitive I was to to cold things and often dropped them from the shock! I had to wear gloves to eat a banana because it was too cold to hold comfortably. And the sickness, oh my god. I slept most of the time, which was good, because it was respite from the nausea.

I felt quite excited to go for my last chemo, knowing it would soon all be over. But when I got home, I felt quite depressed.  I still had 2 weeks of the evil chemo tablets to get through. As usual, I had a couple of ok days (they give you Dexamethasone for 2 days after each treatment- think Trump with Covid giving that speech to say how well he felt!) Then once those two days of the good stuff were done, I bombed. That was a tough week. And at the end of it, a CT scan.

The scan was booked at one of the NHS Nightingale hospitals, about 30 minutes drive away. It was a miserable rainy day, but it felt like such a treat to be out for a drive! At the hospital (once I’d found the way in - which was a Krypton Factor type challenge in itself), I found myself -and a couple of times I lost myself- in a weird maze of plastic covered tunnels like that scene in ET. I couldn’t fault the efficiency of the scan appointment, but it did make me cry. It was all so impersonal; come here, go there, do this... not much kind chit-chat and certainly no understanding of what I’d been through, which was really starting to pile up in my psyche. I felt frightened of what the scan might show and I realised that if they found more cancer I wasn’t sure that I would be able to go through all this again. I had no more fight in me, and after the scan I suddenly felt faint and had to go sit down in a sterile, plastic recovery area, where I sobbed like a little girl.  

I thought about this cancer journey I’d been on since January 2018, four days after the man I was in love with, my first long-term relationship since separating from my husband in 2015, told me he would rather spend his days off with his other lady friend and just see me, as a friend (WB), at the weekends. That. And then, within days of that stomach-churning wake-up call, I go for a colonoscopy, where they tell me they’re pretty sure I have cancer.  This is followed a few days later by MRI and CT scans, and a few days after that, I get my diagnosis of Colon Cancer, from my very gently spoken but worryingly grave consultant. This put me on a three year rollercoaster with deep lows and short-lived highs. The first plunge into despair was not actually the diagnosis but the then devastating emergency ileostomy. Who would ever want me now, with a bag o’shite attached to my tum? I might write about all that separately at some point,  because at the time it was a big deal. A massive deal. But I didn’t focus on the cancer at all really, I was more interested in getting it dealt with and living my life. I was accused of being in denial, being an ostrich (you know who you are!) but that was my way of getting through it; I was only 46, and I had so much I wanted to do! This was just an inconvenience, a blip, but it wasn’t going to stop me living my life.

That whole cancer journey was, to begin with, a challenge to ‘get done’; but it began to feel like the Crackerjack cabbage game where kids were given more and more junk to hold. 

I can do this, I thought, and didn’t get too down about it. But the more they piled on me, the harder it became to hold it all. Rightly or wrongly, I left a lot of that to my mum. I let her hold in mind the important stuff; my calendar of appointments, driving me to treatments.. the stuff you have to plan for, the problems that might come up. I’ve never been very good at all that and Mum is a organisation ninja. As for me, I got good at compartmentalising my life, breaking it down into chunks that I could see the end of. Chemoradiotherapy for five weeks. Done. Early menopause as a result of the radiotherapy: FFS really??? Ok.  Major surgery, Lower Anterior Resection, where the diseased part of my bowel is amputated. Done. Infection at resection site, back in hospital with a tube up my arse collecting gunk in a bag which I have to carry around with me. Really gross and unpleasant, but done. Same again a couple of weeks later. Done. 

12 weeks after the surgery I begin a Counselling placement and throw myself into all the coursework I missed while I was on sick leave. I’m volunteering several hours a week and having fortnightly Supervision to discuss my client work, writing assignments when the kids are in bed. My 100 hours of client work is completed by June 2019 and I get all my work handed in, marked and signed off, while continuing to volunteer. I love it. I am where I wanted to be, doing what I wanted to be doing. My first annual CT scan comes back clear and by the end of the Summer I am qualified! When I go into college to collect my certificate in early September, I feel accomplished and happy, so I treat myself to coffee in a quirky cafe where everything is for sale, and for £30 I buy myself a chair I’ve been coveting; it’s handsome and comfy but very tatty, and it’s going to be my ‘Counselling Chair’ one day! Life is GOOD.

Then, in the Autumn, I get the phone call I’ve been waiting for; the hospital call with a date for my stoma reversal surgery. Ella Fartzgerald the stoma is to be joined back up with my now healthy (and slightly shorter) bowel, and put back inside my abdomen. The replumbing is to take place the day before New Year’s Eve. The arsepipe is going to be back in business, and after two years of bum silence I will once again know the joy of a satisfying botty-burp. (It’s true, you really don’t know what you’ve got ‘til it’s gone!) What a perfect beginning to 2020, I thought, I will be back to ‘normal’ again for the new year!

Ahhhh 2020. Oh lol-lolly-lol-LOL. 

Turns out ‘normal’ will never happen again: enter Lower Anterior Resection Syndrome. I won’t expand on that in too much detail here, now, because it’s ongoing and embarrassing and frankly it’s life-limiting, demoralising, mortifying and just doesn’t seem to get any easier, although I am learning to manage it which sometimes works but still often ends in disaster. I never thought that I would miss Ella Fartzgerald, but she was a LOT less hassle. When Boris tells us to ‘Stay at home’, I’m feeling quite ‘Ha-welcome to my fucking world’ because I haven’t been able to go anywhere except the toilet for months. Sorry, but when I hear people moan about the Covid19 lockdowns, I sometimes think, well at least now everyone’s miserable and not just me; it’s not like I’m missing anything. (You see, even I can be a selfish bitch sometimes.)

My previous post ‘New Scribblings’ explained that I had just moved house and had my second annual check-up scan, and was ready to start thinking about getting back into my volunteer counselling work again, when I got more bad news, leading to more major surgery and the chemotherapy I have just begun to recover from. So this post has come full circle. Wow, I’ve been through a lot of shit, literally and figuratively.

So when I went to see my oncologist last week, I got the results of my latest CT scan. The week before I had been very frightened of what they might find, and felt very low and tearful. All that time, 3 years, all that stuff that had been piled on me and I had managed not to drop it all, like the Crackerjack cabbage game... and waiting for those scan results I had begun to wobble and lose my grip on it.  There was an overwhelming sense of fear, and my inner voice was saying, if you give me ONE more thing to add to this pile I’m going to drop it all, maybe even on purpose. Do NOT, I’m warning you, give me ONE more thing to add to this pile because I will break. I can NOT do this any more.

But the results were good. No evidence of disease. No cancer. What a relief. It’s over, for now at least.  I felt relieved and elated for a couple of hours, and then just angry, because now I was supposed to go out and buy those beautiful leopard print, kitten heel shoes! That silly woman who had written about them had set me up, with her woefully inaccurate expectations of what I would feel like by the end of chemotherapy, and I felt really bloody angry about that. The shoe thing was like adding a cabbage to the pile of things I had been expected to deal with. And so I rejected it. I don’t want the damn shoes. I just want to be able to put all this shit down now, and  live. And for my life to be about living. I’m not naïve enough to get all ‘happily every after’ about it, but for now, I’ll take it, and I’ll run with it.

A lady I really admire put it perfectly the other day, when we were chatting about how the pandemic has affected people’s outlook and behaviour. She said, since last March, we’ve all been living our lives from the perspective of fear and threat. Our primary goal each day, particularly in the beginning of the pandemic last year, has been to get through the day and not die. Protect others so they can also not die. But having mercifully not died (and so very many have not been so lucky), it’s our responsibility and our birthright as human beings, to also live. Actually, purposefully LIVE! Living is not the same thing as not dying. Living is about more than just existing or keeping essential organs functioning. We need meaning in our lives, and to have that, we need other humans and something joyful to do, preferably both at once.

Thank you to all my other humans. The humans who have given me the gift of not dying yet.  🌈 And the humans who help me feel the joy of living my life. It’s time to get on and do it now. I’m really looking forward to doing it with you! 💗

Decisions, Decisions...

So, it is decided. I AM going to have chemotherapy.

I did think, going into my oncology appointment on Tuesday, that I was going to be given a list of reasons why it was in fact not necessary for me to have chemo.  The phone conversation with the liver surgeon about the success of my operation was very positive, as I’ve mentioned previously… he seemed to be saying that there was just no need to trouble myself with any chemo – the cancer was gone.  I also mentioned previously why I was sceptical about that.

In these days of second wave Covid, patients are asked not to bring anyone else to their hospital appointments, but I knew that I would be given lots of information I would immediately forget.  So I asked if BFF Nurse L would accompany me, since she was already working on the chemo day unit that day, and would already be all PPEd -up... also I knew that the discussion would make a lot more sense to her than it would to me.   Luckily she was able to get a bit of time free to come with me, and thank goodness for that, because the only thing I could have accurately predicted about that hour was that I would forget all the details.   It didn’t go the way I was expecting, at all.

I had heard a lot about my oncologist – Mum likes to do her research and had already filled me in on Dr S’s long list of credentials.  L also told me how brilliant she is and how lovely she is with her patients .  That was all good to hear.  I’m a little ashamed to say that the first thing that struck me about Dr S was her footwear – the most beautiful shoes I’ve ever seen.  (I’ve been thinking about them all week and searching for them online, and I’m not even a particularly shoey person really!)  These are the nearest I’ve found but still not as beautiful; her shoes had a lower, more kitteny heel.)  Anyone wearing shoes like that had to be trusted.

 

Shoe envy to one side, Dr S. really impressed me with her knowledge and her candour.  She told me right off the bat that she was somewhat on the fence about what to do for the best in my case.  There were various unusual factors in my particular situation (naturally I can’t remember them now!) which meant that the ‘usual’ course of action would not necessarily be best for me.  There were a lot of reasons based on data from clinical trials why NOT having chemo would be a perfectly sensible decision.  I did a 180. I had gone from thinking I was going to insist on chemo, to thinking I was about to surprise myself and everyone else by deciding not to have it.

And then I was given all the reasons (again based on data from clinical trials) why going ahead with chemo would be ‘perfectly reasonable’.  At this point I think my brain blew up.  When Dr S. said she’d done a lot of talking and would now like to hear what I was thinking, I ceased to function for a moment!  What was I thinking?  I just honestly didn’t know!  Insert exploding head emoji! 🤯  Then my eyes teared up.  I was overwhelmed and confused and needed to talk it through with some people.  I wanted to hear what my friends and family thought about it, consider their thoughts, and see how I felt then.  So that’s what we agreed I should do.  I left with the promise of a letter explaining my options, and an appointment booked to go back in 2 weeks to tell her my decision. 

I had been blindsided and now just felt inert. I knew Mum would ‘want to know t’bottom o’ meggy’ (as Grandma Nellie used to say!) so L came to the rescue and explained everything to her for me.  Mum was upset.  She had wanted answers and certainty.  I watched their faces carefully, looking for clues to point me towards what I should do.  I couldn’t consciously find any.  L asked me which way I thought Dr S. was leaning, and I realised that I had felt a vibe from the oncologist (with no idea how or why I felt it) that I ought to go ahead with the treatment, albeit with all the information and no guarantees.

I spent the afternoon turning it over, but I kept coming back to those gut feelings.  Although it was only very slim, there was nevertheless a chance that having chemo could put me in remission for good.  I couldn’t imagine how I could ever feel good about not taking that chance, even considering all the risks and the shite I might have to get through.

When my phone flashed up that the hospital was calling later that afternoon, I answered quickly.  It was Dr S.  She said she had been thinking about me and my situation, and understood that I had gone away with a big decision to make, so she knew it was bound to be on my mind.  She said rather than let me stew and worry for 2 weeks, she thought it might help me to decide if I knew what she thought I should do.  YES.  That would definitely help.  She had been to talk to some of her colleagues about my case, to try and get some sort of consensus, and they had all agreed with her that it was not a straightforward case, but, all things considered, they would all advise me to go ahead with treatment.  That’s all I needed to decide. The experts and my gut were alligned.  

So now I'm ready, let’s do this!  My first chemo is booked in for three weeks time.  I’m happy with the decision and I know the risks.  I think sometimes there is power and peace in the knowledge that you have chosen to do something and are responsible for however it turns out.

 

Last time I had cancer, when I was going each day to the hospital for treatment, there were some beautiful little birds (made from the wires that go around champagne corks) in a display case in the foyer. https://www.champagnebirds.com/ I saw them every time I went in and out of the lift to radiotherapy.  I thought to myself then, when this is all over, I’m going to get myself one of those little birds.  And I did.  I bought a lovely little bluetit who sits on my mantelpiece at home, and he makes me happy every time I see him.  

This time, I told Mum and Lynne, when all this is over, I’m getting myself a pair of those amazing leopard print heels.  😁

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. 

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.

 

This is my life, my silly crazy life

Just a little insight into our day of relentless low-level stress...

Boo is in Year 6 now and has her SATs this week.  So we get up early because she wants to go to SATs breakfast club with her friends. This ever-so-slightly-early start and change in routine makes little sister Miss 9 anxious and because she's already tired after a weekend of too much screen-time and no sleep at Daddy's, she has one of those whines that lasts for about an hour: ‘But I haaaaaaaate schooooooooool thougggggggghhhhhhhh, whyyyyyyyyyyy do have to gooooooooooooooooooo????...’ etc.

Meanwhile, big sister Ms 13 is having trouble getting ready for school on time again: her hair (or something) won't go right and she's stressing about exams this week. ‘I don’t know what I’ve got, or when, and nobody will tell me.  I don’t know what to do.  I can’t go.’ 

I say, ‘Fine, just go in as soon as you're ready, I’ll call them and say you’ll be in a bit late.  I have to take your sisters to school now.’   She goes in her bedroom and slams the door.  I know she is flopping onto her chair-bed and looking at her phone, rather than getting ready, but right now I have to be somewhere else.

But FFS, Boo isn't ready. She has a tummy ache. I'm thinking nervous tummy, SATs related.  I get the sulky-faced and whiney Miss 9 loaded up for school with folder and lunchbox, and just at that moment, Boo throws up HER ENTIRE BREAKFAST, luckily for me, into the kitchen sink. Then she immediately says she feels absolutely fine and wants to go and do her test.  I turn on the taps, gipping at the smell of milky Shreddies vom, and try not to see it blocking up the plughole. 

I ring school, but there’s no answer, so we go there in the car, sick bowl and wipes in hand.  I need to ask them what they want us to do- kids aren’t supposed to be in school for 48 hours after they’ve puked, just in case it’s a bug, but if a child who has been entered for SATs doesn’t then complete the test, it will bring the scores down for the entire year group, so they really won’t want her to miss it.

At school, news of our puker sends more than one slightly stressed-out (SATs related!) member of staff into a bit of a flap – nobody seems sure what we should do, and we are referred to the executive head, who makes the executive decision to send Boo home, see how she fares, and if ok bring her back at 10.30am for the test, which she will do in isolation (which she would have done anyway, since she is allowed 11 minutes extra time- WOO!- and will be completing her tests in a more relaxed environment with her support assistant, due to her autism.  See- there are perks.)  She will then need to be collected by me after the test and brought home.

At the news that Boo is allowed to go home for a little while, Miss 9 becomes even more disgruntled.  ‘It’s not faaaaaaiiiiiir!  How come SHEEEE gets to go home and IIIIII have to go to SCHOOOOOOOOOL?’   Boo, meanwhile is looking at me with daggers and moaning, ‘Awww’ in a very loud and sulky voice, because she wanted to be at school eating toast with her buddies.  Both girls hate me.  It is, after all, all my fault, as usual.  I can do without this this morning.  Seriously.

I drive us all halfway home, when I realise that I’ve forgotten to call Ms 13’s school to tell them she’ll be late.  I pull over and ring them, it’s a quick call without the need for lots of explanation – the attendance officer knows my voice all too well and is well-versed in the trials and tribulations of getting my first-born to school on time.  Then I look at my watch and notice that there is no point going home now as it’s time for Miss 9 to be in school, so I pull a Uey? U-ie? Yooey? and  head back to the primary school, lock Boo and her sickbowl in the car, run round to the school gates with Miss 9,  back to the car, and home without further incident.  I walk in to find Ms 13 messing on her phone and eating crisps, already over half an hour late for school.

I take the phone, and eat the crisps.  It is 9 am.

There was more.  So much more.  Backwards and forwards in the car to the high school, then the primary school.  Sink unblocking. A lost flip-flop. Back to the primary school for Boo.  A headache.  Three loads of laundry.  I want chocolate and the Co-op is shut for a month.  I’m supposed to be working on a presentation for college that was actually due last Thursday.  For lunch I’m eating out-of-date pasta salad, which I bought especially for my fussy-eating turned vegetarian turned vegan 13 year old last Tuesday, and she then ate nothing but crisps all week leaving me with a load of extortionately priced, healthy and beautiful deli items going off quietly in the fridge, which I refuse to throw away.  If I’m sick, I should make her clean it up.  My cat thinks it’s teatime and is meowing at me needily, guilt tripping me through the window.

I now have approximately 90 minutes to do a day’s work before the afternoon school run.

This is my life.