Don’t count your chickens

At the first chemo appointment, the nurse had told me to keep a note of any side effects each day. Once the puking episode was sorted, there weren’t really any side effects to note down for the rest of the first cycle, so I started writing down daft stuff like ‘steam is more visible’ (as A pointed out, that’s because it’s winter. It’s cold.) Aside from some expected fatigue and weakness, the main side effect of chemo looked like it was going to be boredom.  I even started looking for flexible volunteering roles. Chemo was going to be a piece of cake.

And then cycle two happened.

The journey to the appointment was one of those times of fleeting perfection; in the ‘driving’ seat on the top deck of the bus, listening to great music with a bright, cloudless blue sky outside. Just a joy to be alive. Last time was fine, this time would be fine.

Straightaway that prediction fell on its arse. Normally, I don’t mind needles at all, but this time the IV in the back of my hand felt all wrong. Dissatisfied with her work, the nurse tried the other hand. That hurt too. After several people had had a poke at it and various things injected in to it to see if it was working, it was deemed adequate for a short lived drip. Last time, the nurse had insisted on me having a small snack before taking the CCNU tablets to line my stomach, but this time we forgot, and so I ended up kind of nauseous for a couple of days, but no actual puking this time.

Unlike the first cycle, this time, the 11 day treatment period left me dog tired, weak and achy all over. Each day I woke up feeling like I had been beaten up. Unsure whether this was a normal progression of treatment or something else was going on, I called the Neuro Oncology nurses after a week, who asked me to come in ASAP for a blood test to see what was going on. They said normally they’d send a District Nurse out to take the blood, but this was on one of the days when there was heavy snowfall, and all the District Nurses who weren’t snowed in were dealing with emergencies. So off I and 10 year old L, who’s school was closed because of the snow, went.

When we arrived, the hospital was quiet. It looked as if the snow, which was still swirling madly outside had kept lots of patients and some staff away. We had been told to head to the Supportive Therapies Unit (STU) which is next to the chemo day unit and provides extra treatments for chemo patients such as transfusions, port (a semi-permanent cannula) care and also functions as a mini chemo A&E.

“We’ve got a bed ready for you” the nurse said. A bed? For a blood test? Dragging a bored 10 year old along with only 23% battery life left on my phone now seemed like a really bad idea. But on the other hand, I was ridiculously grateful to be able to lie down, even if it did involve an interminable game of ‘I spy’.

After blood tests tests, interviews with medical students and some prodding, the consensus was a resounding “dunno”. This news was delivered by Abdul, a Registrar who may or may not be attached to STU and may or may not be specialised in brains. I’m not sure because he speaks so quickly and so softly that I cannot catch a word he says. He is quite a sweetie; he has a permanently surprised look on his face like he fell asleep but woke up somewhere he absolutely did not expect to be and is frantically trying to work out what the flip is going on before someone shouts at him. Abdul says my blood counts are normalsomumblemumblemumble,temparturemumblemumblemumble, *runs away*.

Point is, there’s no reason for me to feel so much worse this time round. You tend to be a person who has a certain side effect, or a person who does not. This is sort of good news; if the severity of side effects stepped up this much for all six cycles, I’d be a puddle on the floor by the end. Someone suggests that maybe I’m coming down with something else, and that’s what’s doing it? Dunno. Go home, keep on keeping on and call back if necessary. So having just missed the bus home, L and I head back out in to the snow. She’s so delighted by the deep, crisp covering, I decide like an idiot that we may as well walk home. One day I will learn the difference between wanting to be able to do something, or thinking I ought to be able to do something, and actually physically being capable of doing something, but it’s unlikely to be soon.

By the time we get home, my head is spinning and I’m several hours late for my dose of chemo tablets. Maybe it was the delay, maybe it was due to feeling rubbish anyway, or maybe it was the exertion, but I end up puking again. The perfect end to a perfect day. *face*

That at least did teach me to take it easy for a couple of days, until I woke up with some itchy insect bites, and ran out to an appointment without stopping to consider why insects would lie dormant in a mattress for 2 years since purchase, then synchronise their watches to all appear on the same night, with a strict agreement only to feast on the person on the left hand side of the bed. After scratching through the appointment and a visit to town, by the time I got home I was so itchy, I tore off my clothes to stop them irritating my skin. Those were no bites. (Thank goodness really. I was in no mood to defumigate the house).  My arms, legs and torso were all covered in a raised red nettle rash. Thanks to Chris, another brain tumour blogger who is a few months ahead of me in his treatment, it was obvious why.  I’d developed an allergy to Procarbazine, the P of PCV chemo. Luckily, the ten day course of Procarbazine tablets had ended a couple of days previously, or else the reaction might have been worse. This was soon sorted out with antihistamines tablets and cream.

The aches, pains and fatigue dragged on, gradually improving until around day 18 of the 42 day cycle when I started feeling better. And then on day 20, the wheels fell off again.

You’re supposed to call the chemo hotline if your temperature goes above 37.5 degrees at any point, or you feel at all unwell with or without a temperature. That seems a little alarmist to me, but my temperature was 38.5 and I felt like dogshit, so relented. The STU summoned me for more blood tests. At reception, I was given a surgical face mask to contain the germs. Pro tip 1: try not to sneeze repeatedly in a surgical face mask. It is not pretty. Pro tip 2: don’t forget to lift the mask up when taking a drink. That isn’t pretty either.

The lovely Farzeen gave me a bed in STU. You know how pickpockets can shake a person’s hand and steal their watch at the same time without them even noticing? Farzeen is like that with IV lines. I swear down she somehow got that thing in to my inner elbow before I even took my coat off. One second it wasn’t there, the next it was. That lady has SKILLS. Blood tests, cultures and throat swabs were taken to try and work out what was wrong with me. Whilst waiting for the results, I got chatting to a guy in the bed opposite. We were about the same age, and he looked fit and healthy, but was on second line chemo for (non?) Hodgkins lymphoma, which is some serious stuff. We had similar approaches to our illnesses and he told me that it had taken a dose of flu during for him to realise that perhaps he needed to be slightly less laissez faire about his health during treatment. “You’re the same, aren’t you?” he asked “Not really taking it seriously until something makes you.” Perceptive bloke.

The blood results came back after a while; reasonable white blood cell levels, so any infection shouldn’t be life threatening, no obvious reason why this was happening, and the blood cultures would take another couple of days to come back. Abdul said I should go home, take paracetamol as needed and come back if my temperature stayed high. (That’s what Farzeen said he said anyway. As usual, I couldn’t hear a word).

Two days later, my temperature hit 39.6. Back to STU. Farzeen had a hydrating drip in to me in about 0.3 miliseconds. The funny thing is she asks everyone “would you like me to count down from 3 or just do it?” It’s a good thing everyone I overheard told her to just do it, because I reckon she’s just done it before she even asks, and it’s just a distraction technique. More tests, swabs chest x-rays and examinations ensued. This time the throat swab showed I had Influenza A. *weak yay*, and one lung wasn’t working properly or something. There was some consternation and confusion as to why the previous swabs had come back clear, and even though that’s the sort of mystery I usually enjoy, I just couldn’t be arsed to care. It was surprising to find I had flu, as the only time I’ve ever had full blown proper flu was hellish. It was nothing but pain, sweating and watching the clock counting down the minutes until the next dose of drugs. This was unpleasant, but nowhere near as bad, which must be down to the flu jab reducing its virulence. Once the diagnosis was in, Farzeen solemnly closed the curtains around my bed, to contain the germs, because as we all know, fabric with big gaps at the top and bottom does that very well.

To the nursing team’s surprise, Abdul decided not to admit me. Fair enough, my germs probably posed a significant risk to those on the ward, and living so close, I could easily come back if need be. He prescribed a course of Tamiflu and murblemurblemumble which turned out to be a Berocca type medicine for low phosphates. It made a weird contrast; being treated with kid gloves all day then unceremoniously turfed out in to the cold to make my own way home.

Now everything would be fine. Except…. my temperature would not break (I think the temperature had a lot to do with the crazy thoughts I was having in my previous post) and other symptoms continued to get worse. Three days later I had to call the hotline again. “Please don’t make me come in again.” I begged.  “You have to come in” decreed the triage nurse. This time I was banished to a private room amidst jokes about naming a wing after me, such were the regularity of my visits to STU. For some reason the Clinical Director of the hospital came to see me, accompanied by a particularly terrified looking Abdul. Typical of a bloke in that type of position he was all boomy voiced bonhomie and keen to reassure me that my brain tumour ‘probably’ wasn’t getting worse. Cheers pal, I never thought it was until you suggested it. By now, the main concern was making sure I’d be fit to start the third cycle of chemotherapy in a a week or two, so was sent home again to rest, and I made a conscious decision to start ignoring any symptoms or temperatures unless they were intolerable as traipsing backwards and forwards to STU every couple of days was not helping at all.

As I left for the last time, I overheard Farzeen asking the nurses at the desk to call infection control to wash down the walls of the room I’d been in. For some reason, this  compelled me to loudly announce to everyone in earshot:

I DIDN’T DO A DIRTY PROTEST!

Cheers cycle 2. No one thought I did until I suggested it.