Remember the old Superman film where he was a wrong un'? He had stubble, was aggressive and mean and snappy, and never mind saving the world he could barely raise a civil word.
Well, like Superman even fairies have bad days.
I've had quite a few recently and if you bore the brunt of my mood or short temper recently then I apologise, it's just terribly hard to be positive and 'look on the bright side' or at the 'success survival rate' or even the fact that 'it will all be over before you know it'. I am rude when I'm scared, and right now I am pretty frightened, I keep trying to be brave but it's terribly exhausting, I haven't yet started chemo but I have been sent the start date and subsequent treatment dates and that was enough to send me over the edge. On the same day I received that letter I also received another one inviting to me a separate session called 'De-mystifying Chemo' a useful appointment which would help to allay all my fears about the upcoming treatment and explain what to expect. Shame they both happened to be on exactly the same day.
When I went in to sign my consent form I did manage to have a very civilised argument / discussion with my oncologist . I brought up the fact that she had gone on leave and I just mentioned that it would have been good to know as I had been very worried, it was a lot like lighting touch paper. If there is one thing the medical profession do not like it is being questioned, happy to have every part of your life dissected it doesn't work quite the same when it's the other way round. The 'conversation' went something like this.
Me: "It would have been good to know that you were going on leave for a week as I had no idea what was happening"
Oncologist: "I'm sorry but what has my personal leave to do with you?"
Me: "Well aside from the fact I was waiting on results which you felt were not clear, and my treatment depended and whether or not further investigation would be needed, the last thing I had heard from you was on Friday night at 7.30pm that you were not entirely convinced by the findings from the other hospital."
Onclogist: "I still do not understand why I need to let you know when I am taking personal leave, it is not your business"
Me: "Well it becomes my business when I have been pushed from one professional pillar to post, the fact that I had a pretty big scare due to an incorrect analysis of results only to be told that the one person I had come to rely on, the one person I thought I could trust was off on leave without letting me know what was going to happen next."
Onclogist: "There are a whole team of people here who could help you, I deal with hundreds of patients, my personal leave is not something I discuss with any of my patients."
Me: "I have only met you, and been given the number of your secretary, I have met no one else in your team and had no idea I had any other point of contact except for yourself or your secretary. Your secretary was unable to tell me of any results."
Oncologist: "I cannot be expected to let every patient of mine know when I am taking leave."
Me: "I totally agree, I have no need to know where you are going, how long for or if you have had a nice time, I am just one of those hundreds of patients and I just wanted to know what was happening with me and when. I was treated pretty badly over the last set results and was left waiting to see if my chemotherapy could even start".
Oncologist "We only found out today what the results were, so me going on leave had nothing to do with you being able to find out or not"
In fact I had been so worried about the results and the fact that anything negative could delay the chemotherapy that during the week I had called up the other hospital and had finally spoken to someone who had been able to find out the results (off the record) and reassure me that everything was fine. At what point is it justified that the patient has to turn detective to find out something because the right person to ask is on holiday?
I now felt so frustrated and fed up with the entire discussion I just wanted it to stop so I could sign the consent form and get it over with, so I did what all sensible women in the same situation would do, I started crying. I felt no guilt, although she did look slightly alarmed. Used to dealing just with cancer perhaps she appeared surprised there might be a heart function too. She did agree that I had been messed around with and the atmosphere between us started to thaw somewhat although there was definitely an underlying feeling that I should never have crossed the 'personal' line.
In the end we were friendly-ish, I signed the form and we discussed the effects of chemotherapy. Honestly this lot could win awards in sitting on the fence, I was told I probably would be very nauseous, but then again I might not be that bad, I may have mouth ulcers, but I might not, I might lose my hair but maybe not. She made it very clear that I should try and lead as normal a life as possible. I asked if I could carry on teaching my Spanish classes. She didn't see that as a problem, in all likelihood that would be fine, just be aware of any infections the children might have. That seemed like quite a big ask as there are 60 of them and they don't tend to carry warning signs...still, she was the expert.
I felt quite positive leaving her office, it wasn't going to be all bad this chemo beeswax, I should be able to just get on and deal with it, her reassurance that most people lead very normal lives seemed incredibly positive and in complete contrast to the horror stories I had heard. That's the trouble with me, if you say it can be done then I will do it. Regardless of the consequences.
So with term ending for Christmas, most of the orders already out for the coffee I tried calming down. Unfortunately Bad Superman crossed with The Mean Reds and with the first chemo looming things were not looking good, mainly for The Boyfriend who really did demonstrate the patience of a saint despite me spitting frightened fury at him at every opportunity. The first chemo was two weeks before Christmas and the next one after New Year, with a decent break in between to allow me to at least try and forget about it all before the first three months of the year were swallowed up by treatments.
The week before it all started was like a ticking bomb, just waiting and wishing the time away and yet hoping that every hour would drag by. I went to the nurse to have the dressing on my leg changed, she asked if I had had a flu jab. Nope, that one had passed me by, apparently I should have been vaccinated two weeks before the treatment started to give the vaccine a chance to work. Apparently I was going to be very prone to infections and viruses and needed this jab almost as much as I needed....oh I don't know, meditation? Who should have told me that? Where was that written down? Which manual?
She jabbed me and said I may feel some discomfort. Boy did she hold back on the truth there, I felt nothing for a few hours but soon enough my arm felt as if it had been held in between revolving doors, I was in agony and couldn't move it properly for 24 hours. Still, it briefly took my mind off the impending nightmare...
I have to have blood tests first before each treatment, this is to check your white blood cell count, your red cells, stuff and more medical stuff. Then you are back a few hours later to have the treatment itself, that means you have three hours to find something to do, that's three hours of pretending. We tried Asda to pick up a few bits and then Sainsburys for a coffee, neither place was doing it for me, I walked up and down the aisles picking stuff up and putting it back all the while feeling like I had an illuminated neon arrow above my head screaming "Chemo Chemo Chemo". We eventually gave up and headed back to the hospital.
The room itself is open plan, several open plan rooms, all with armchairs and chairs lined up against the wall where all the sockets are. Lots of very smiley nursing staff running around being helpful and busy, lots of not quite so smiley looking people hooked up to IV's all with their arms resting on white pillows. Machines bleep in continuation as they need to be re-set or their batteries fail...kidding just kidding.
We were given our seats, and to our left and right there were two men both hooked up to their IV's. The man to my right pretended we weren't there and avoided saying anything to us directly, this was quite hard as we were so close we were practically sharing a socket. I was unaware of the etiquette so I said hello to his wife. She managed a smile and a hello while simultaneously continuing to read her newspaper and avoiding all eye contact which was quite disconcerting. In the subsequent hours there she managed to cover The Mail, The Mirror and The Express from cover to cover she also did every quiz, crossword and Soduku inside the papers and and barely raised her head to drink a cup of milky tea. He husband was less than impressed when we spoke Italian as he was then unable to follow our conversation, I began to realise why his wife had brought so much reading material.
On our left was another man who seemed nice enough, he smiled at us and then just carried on minding his own business, reading his paper and absorbing his poisons.
The nurses were fabulous, there is no other word for them, all different nationalities and all wanting to make everyone feel as if this was a day out not a slice of horror. My nurse was called Blanchita, she was from the Philippines and was lovely, she had a super strong accent and I kept wanting to call her Margherita Pracatan (from an ancient Clive James show years ago) however out of respect I refrained, although in my head I did keep saying it 'Blankeeeta Practaaaan' over and over again for my own amusement.
All of the nurses were sweetly very curious about us and came over to chat to The Boyfriend about Italy and wanting to know how I could speak Italian, this did not impress the man to our right as he was evidently not used to new people being the centre of attention, he was the expert, an old hand at chemo and familiar with the treatment, the nurses and the tea lady. This man had bought the t.shirt having been there seen and done it all, he knew all there was to know about everything it seemed, except languages.
As we were talking about names Mr.T.Shirt said loudly and rudely to no one in particular "I can't do names I can never remember them all so I just call them all Love or Darlin'".
The lovely Blanchita practically reared up and pointed to a sign on her meds trolley and said politely but through gritted teeth: "My name is Blanchita, see here B L A N C H I T A very easy, I like to be called by my own name, thank you"
First rule of chemotherapy, never ever upset the nurses.
The meds trolley was wheeled over to me and 'my' medicines were unwrapped, bags and bags of comedy sized syringes the size of which needed to be seen to be believed, the first two were full of a bright red liquid, the rest were just as colourful but I stopped looking. Blanchita was very kind but even she was struggling with my veins, sitting in front of me she slowly administered each 'medicine' by feeding it into my arm, it was hard because my veins wouldn't play ball and were hiding from her, I totally sympathised and wondered if anyone would notice if I too disappeared. She persevered and wrapped my now cold stinging arm in a blanket to try and keep it warm, she also mentioned that each drug may have a special side effect, itchy bum (nope) fizzing sensation in my nose (yes) and an ice cold painful headache (yes) but these were only temporary and it killed time waiting for each one to happen.
I tried not to imagine the dreadful chemicals racing around my body, ironically on a mission to kill bad stuff which may be hiding somewhere, but at the same time destroying any good stuff which I've spent years building up. It was like a civil war raging inside me, with no one really sure who was on the winning side and me as the hosting battleground. As the drugs took effect I started to feel really strange, tired and out of it, Blanchita talked to me about fitting a Pic Line before my next session, no more needles she explained and it would make it much easier to give me the chemotherapy, it was simply a tap in my arm. I wasn't really listening, it's been a while since I've had any control over what is happening to my body, I just go along with it because the alternative tends to be worse.
Leaning my head back on the chair I tried to keep my eyes open and I saw the man on my left smiling at me, he then reassured me that a pic line was so much easier than needles for the countless blood tests as well as the chemo, I felt like I had been slowed down to the wrong speed but I managed to thank him, he then nodded at the sealed envelopes of syringes on my trolley and he said:
"If any of that spills or breaks it is considered a major hospital incident" then he went back to his crossword.
Even writing that makes me feel sick.
Leaving the hospital I was dosed up with anti-nausea tablets and anti-nausea steroids to be taken at various hours of the day mainly just after or just before meals which is a joke because the last thing you want is food, at any time of the day. Not initially though, I arrived back home early evening feeling spaced out, tired and interestingly absolutely starving. So I ate and then went to bed and although I slept for a couple of hours I soon woke and that's when it started...
My food poisoning a few weeks earlier was good practice for this, you feel sick but it's a sickness you can do nothing about, it is everywhere and nowhere in particular, it hurts but not like cramps it is a deeply unpleasant sensation which just seeps over you in waves making you groan because there is nothing you can do and no one who can do anything for you. I lay there hoping and praying it would pass or that the drugs would kick in and take the nausea away. The sickness I expected, my imagination took me by surprise, every time I closed my eyes I could visualise the stuff pumping around my body, I was back in the room with giant talking syringes and I could hear the machines bleeping. Hallucinating? Maybe. I wasn't asleep I knew that much, that didn't happen till early the next morning.
It took me about three days to start to feel normalish. I was incredibly weak but my appetite returned with a vengeance and I craved beans on toast, roast chicken dinners and fish and chips, I wasn't going to deny my body what it wanted to eat but it occurred to me that I certainly wasn't in danger of fading away on this diet if it continued like this for the next three months.
I had little energy but I was determined to feel better as soon as I could. I had been told that I was to live as normally as possible, and that is what I did. I did not feel like staying in bed all day, after all some people returned to work during chemotherapy, that's what the expert had told me and stupidly I believed her.
That'll learn me...
