Dublin in a Day, Back to Neutropenia and the End of the World

Phew! So yesterday I got back from an exhausting two-day tour of the UK and Ireland’s cancer hospitals.

It started with a 5am rise on Tuesday for my flight to Dublin with Mum, to meet the oncologist who’ll be looking after my radiotherapy treatment. By 9am I had trekked through two airports and endured a cramped Ryanair flight with a screaming, kicking child in the seat behind me, people coughing all around me and the constant intrusive din of Ryanair’s overhead advertising of refreshing J20, a selection of hot drinks and snacks and a very special, exclusive 2-for-1 scratch card deal. Let’s just say I understand why air travel is not recommend during chemotherapy treatment. It’s exhausting.

First up, I headed to work to see my colleagues and pick up my post before going to my hospital appointment. At 11:30, after greeting half of my department with a hug and being regaled with tales of how half of them had just got over the 24-hour vomiting bug that’s sweeping Britain and Ireland, I called my doctor for the results of Monday’s blood test and found out I was neutropenic again. My white blood cells and neutrophils had completely reversed their earlier gain and were so low that I had virtually no infection-fighting abilities and shouldn’t really be around anyone at all, let alone sitting on Ryanair flights and hugging germ-ridden workmates (no offense!). However, I was already in Dublin by that point and any damage had already been done, so the hospital said they’d test me when I got back to Manchester.

Next up, my appointment at St. Luke’s, a specialist cancer hospital in the leafy Dublin suburb of Rathgar. Now, for those of you who’ve been reading this blog since the beginning, you’ll know I was diagnosed at St. Vincent’s, which is a large hospital in Dublin, and I was expecting something similar. But as soon as we pulled up in the taxi outside St. Luke’s, I could see it was different. You can’t really tell from the photo to the left but it was more like a quaint old people’s home or an American chapel than a hospital – just one storey high and with a very friendly, intimate vibe. I loved it immediately. (Well, as much as it’s possible to love a hospital where you’re about to be blasted to pieces with radiation).

I walked up to reception and said “Hi, I’ve got an appointment with Dr McVey” and the response from the reception desk was a very hearty, smiley, “Ah, you must be Laura!”

Honestly, I have never felt so welcome (even at a hotel, never mind at a hospital!) It turns out I had been in touch with the friendly woman on reception via email, and when she saw me with my little wheelie suitcase she realised I was from out of town and put two and two together that I must be the young British girl coming over for radiotherapy. But still! What lovely people.

Unfortunately, after all that, it turns out I won’t be able to have my radiotherapy at St. Luke’s because they couldn’t fit me in on the public system so I have to go privately at St. Vincent’s instead, but that’s fine because it’s closer to work and my flat. I’ll write a separate post about my radiotherapy treatment plan because it’s too much information for this post, but basically I should start on 2nd Jan and finish at the end of February, with 33 radio sessions.

Flying Back to Manchester

On the flight home, with Aer Lingus this time, I was momentarily delighted when I saw that we were sitting in the emergency exit seats, i.e. plenty of leg room and as much space as possible away from my fellow passengers with their various vomiting bugs and winter flu. The delight was soon snatched away from me, though, when your lady from Aer Lingus looked at me, gestured towards the window I was sitting next to and said “You’re guarding the emergency exit there, are you willing and able to initiate an evacuation in an emergency?” (You see, I had taken off my wig by this point and was wearing a snazzy purple beanie and I obviously screamed “cancer patient/invalid” to her.)

I paused for a moment, recalling the opening scenes from series 1 of LOST. Was I really strong enough, after six rounds of chemo and one exhausting day of travel, to lift a 15kg aeroplane door off its hinges in a crash and lead my fellow passengers down the inflatable slide into the sea, making sure they all took off their heels so as not to puncture it?

“Yes,” I finally said. I was too exhausted to move and I really didn’t care that much about my fellow passengers anyway. (Apart from Mum, and I’d help her down the inflatable slide first anyway). Plus the evacuation procedure looked simple enough.

“Please ensure all electronic devices and mobile phones are switched off,” the cabin attendant said, eventually, preparing for take off.

“Oh NO!” Mum exclaimed from the seat next to me. She had left her mobile phone on, and the cabin lady had insisted we put our bags up in the overhead cabins so as not to block the emergency exit, and now we were all firmly belted in and ready for take-off. “What should I do?” she said, looking at me for answers.

I was in two minds. I knew Mum’s phone was unlikely to cause a crash during our 40-minute flight to Manchester, but I wanted to avoid any increased risk that I would have to get off my poor chemo-sapped arse and shuffle 100-odd passengers out of that emergency exit, so eventually we asked the cabin lady to get Mum’s bag down so she could switch her phone off.

The plane did not crash. We made it safely to Manchester. Then I got a paper cut from one of the items of my mail I’d picked up from the office. Will it ever end?!

Back to the Christie

Luckily, we had the good sense to stay overnight in Manchester on Tuesday, otherwise I don’t think I’d have even had enough strength to get myself back there on Wednesday (purely due to tiredness and still fighting this infection). I was in for my three-week post-chemo check-up, which truly marks the end of chemotherapy – hooray!

Because I was neutropenic on Monday, I went in for another blood test on Wednesday. Unfortunately, I was dehydrated from our overnight stay in a stuffy hotel room (I know people commit suicide sometimes but I really wish hotel rooms had openable windows…) and it took three painful attempts before the nurses could get blood from me. Yuck! Seriously, I must have had more than 100 needle injections so far in 2012.

Then followed a tense wait for my blood count results. If my white blood cells and neutrophils went down from Monday, I would have to be admitted as an inpatient and be hooked up to a drip again for a few days in hospital – possibly spending Christmas Day at the Christie Clinic. But if they went up, I would be allowed to go home. So you can only imagine how relieved I was when the doctor told me they’d gone up. Not exactly by much, but honestly, I couldn’t care less as long as I was able to go home.

Now please let me not have picked up any vomiting bugs in the past two days! (Not that it matters anyway, seeing as the world is going to end tomorrow…)

“Psychological” Problems

Friday turned out to be rather stressful. Having had a higher-than-normal temperature for almost a week, I had been to the doctors for a full blood count test, to check if everything was in order before I headed to London for my nutritionist appointment (of which, more in a later post). Of course, when I called for my results, the receptionist told me to call back at 11:30am, which was precisely the time my train set off for London.

When I was admitted to hospital with a high temperature a few weeks ago, I had a condition called neutropenia, where I had an abnormally low number of white blood cells called neutrophils. While I was neutropenic, anyone who entered my hospital bedroom had to wear rubber aprons and gloves so as not to spread their germs, because an infection can quickly become life-threatening for chemotherapy patients. My neutrophil and white blood cell levels at the time were something like 0.5 (i.e. extremely low).

Naturally, I was concerned on Friday that my GP would call back and tell me I was neutropenic again, and I’d have to abort my lovely first-class train journey with my mother and pay £100+ to jump on the next train back home, forfeiting my nutritionist appointment and weekend plans. So imagine my surprise when the good doctor called back and told me my white blood cells and neutrophils were at 39.7 and 34.9 respectively!

These abnormally high levels, he said, indicated that I must have an active infection but that my immune system (for once!) was fighting it extremely well, producing more white blood cells to kill the nasties. Of course, the daily injections I’ve been having are to boost my immune system and the blood test was taken on day eight of the daily injections, so there was every chance my counts were artificially high because of those shots.

Slightly alarmed, I called the hospital to ask them what to do. Did I need to get the next train to the hospital in Manchester because I had an infection? Or was I fine to continue with my plans because my body was fighting it effectively? I felt absolutely fine in myself, apart from the slightly worrying temperature, nose bleeds, hot flushes, tiredness and other usual chemo side effects.

I managed to get all the way to London, do my final self-injection in the loo of a Vauxhall Pret a Manger café and have my 1.5-hour nutritionist appointment before I got a definitive response from the hospital: I was absolutely fine. The abnormally high white blood count was a natural response to the daily shots and my immune system was behaving exactly as it ought to. I still to this day don’t know whether I had an infection or not, but I have at least stopped worrying about it.

I didn’t manage to perform a jig after my last self-injection because I was still too stressed at that point. My left eye has also been twitching sporadically for the past few days, something that happens when I am stressed. A quick straw poll revealed that a twitchy eye is a Price-family-wide problem. (Good to know it’s not just a side effect of the leftover eyelash glue.) I went to a doctor about it many years ago and was told it was “psychological”. I had saved up four different problems for that particular doctors visit as I didn’t think it sufficient to take two hours off work to ask about a twitchy eye alone, and the very unhelpful GP kindly declared every single one of my ailments as “psychological”. So that told me!

I do feel bad going to the doctor and being told there’s nothing wrong with me. I am a constant guilt sufferer. They tell you to report everything from high temperatures to sore veins to stomach pains, but then you do so and find out there’s nothing wrong and you start feeling like a hypochondriac time-waster. But, as with the lump in my breast that I decided to seek a second opinion on, it’s always better to be safe than sorry.

I finally got back from London late last night after spending Monday catching up with different friends, among whom a 9-months-and-one-week pregnant lady and a friend hobbling around on crutches after breaking her toes surfing. When I went to bed at 8pm on Sunday night and slept until 9am Monday morning because I was so shattered, I never imagined I’d be the fittest and most able-bodied of my friends come Monday afternoon!

The good news is the hot flushes seem to have finally stopped, which means I can rule out the menopause and blame it all on the steroids. I may have had a wee glass of champagne with my hotdog on Saturday night to celebrate (as you do).

The Long Weekend Hospital Retreat

And so it was that I got my first infection and spent the entire long weekend at the hospital.

It all started on Friday night. The aching and tiredness from Tuesday’s chemo had started to kick in so I went to bed at 10pm after watching a bit of telly. As usual, I took my temperature before going to bed and was very surprised to see the thermometer register 37.7 – especially as I felt very cold. My normal temperature is around 36.5 and I knew anything above 37.5 was dangerous for me, but I felt fine and my parents were out anyway so I decided to sleep for a while and see what happened.

By the time my parents got in at 11:30pm, my temperature had risen to 38.6 so we called the chemo hotline. Unfortunately, as I suspected, I was told to go straight to hospital, so I reluctantly got out of bed and started packing my night bag. The problem was my parents had been out for dinner and had had a drink, so they couldn’t take me to the hospital. We would have to a call a taxi to take us the hour-and-a-bit journey to Manchester.

15 minutes later, the taxi came. The taxi driver hadn’t been informed that he needed to take us all the way to Manchester. And he didn’t know how to get there. Nor did he have a sat nav. So he took us back to his taxi rank to pick up his sat nav, and then we sat by the side of the road for 15 minutes while he worked out how to use it. After asking us the postcode 27 times, he eventually set off. Then we stopped for petrol. Then we set off again… With a seemingly defective sat nav that was hell-bent on making us “Turn right!” against every other indication that we obviously needed to go straight on.

Fearing we might end up in London, I was relieved when finally, almost two hours later, Mum and I arrived at the hospital. Then we got lost trying to find the ward. Eventually I got settled in a private room at about 2am and thus commenced a long night of being prodded and poked as three different nurses tried to get blood out of my uncooperative veins, doctors were called and finally I was hooked up to an antibiotic drip for the night. Although the only symptom was my high temperature, I have an infection, which, during chemo, can be very serious indeed, so I’m glad I didn’t just go back to sleep and ignore it, like I wanted to.

The first night was pretty rubbish and I didn’t get a wink of sleep. I felt freezing cold and had a splitting headache. My mum (the poor thing – already keeling over from her no-sugar diet) fashioned a makeshift boat out of a couple of chairs and slept across them. It didn’t look very comfy. It was a bit like sleeping in the jungle with all the sounds going on in my room. The frog ribbitting in the next room, the whirring drip machine that sounds like an army of centipedes walking all over me… I am fully prepared for the start of I’m a Celebrity… Get Me Out of Here tonight…

My room is like Piccadilly Circus, with at least 12 new faces passing through every hour – “I’ve come to take your blood,” “I’ve come to take your observations,” “I’ve come to bring you a weighing scales,” “Would you like something to eat?” “Have you finished with that food?” “Can I clean your room now?” “Can we steal your sofa?” Etc etc…

I’ve been in the hospital two days now and won’t be leaving any time soon as my white blood cells are still too low, meaning I’m very vulnerable to more infection. But fortunately I’ve learnt many a thing and conquered many a phobia since I’ve been here:

1. I can now walk around with my drip machine attached to me without falling over/tripping over my own cord
2. I can brush my teeth with my left hand
3. I can eat breakfast, lunch and dinner one-handledly
4. I can also type with one hand, though it is verrrry slow
5. I can get a night’s sleep without worrying about the tubes attached to my hand
6. I even managed to have a shower with the thing attached to my hand (but disconnected from the machine)

(Sorry there are no pictures today – technology not permitting, I’m afraid.)

You may be wondering how the no-sugar diet is going in all this. Well, I’m proud to say I’m now on day 10 with no sugar. And before you wonder whether the shock diet plan led to my hospitalisation, I can happily say the nurse assured me it has nothing to do with it and she’s also a firm believer in such nutritional plans and said many cancer patients take on a raw diet… I can’t say I am not tempted by some of the puddings on offer at meal times though, and I also did experience a slight sugar high from my cocoa butter lip balm earlier. Desperate times…

Well, this was the first blog post brought to you from the Christie hospital, and here’s hoping it’ll be the last!