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.