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.