Showing posts with label United Kingdom. Show all posts
Showing posts with label United Kingdom. Show all posts

Thursday, 22 January 2015

Whom to tell, how to tell them, and some poor examples of both.

Those of you who know me will be well aware that ‘keeping in touch’ is not my forte. This is somewhat ironic given my ability to talk; the only method of shutting me up is to take my beer away from me, especially if I end up on one of my rants. It is apparent in these entries that I like the sound of my own voice, internal or otherwise, but when it comes down to communication on actual matters and goings on, well you can just forget about it. There are people I consider very close friends, yet I haven’t contacted them in over a year.  This shortcoming is not restricted to friends; family get the same level of slackness. My parents are probably feeling quite smothered given the abundance of skype calls they have received lately.

My local friends I work with; they had been watching my health deteriorate over the months so the diagnosis was less of a shock for them. Still, the news was not put to them very eloquently. I was interested in their thoughts whilst I bumblefucked my way around informing people. In hindsight this was probably something I should have read about prior to undertaking, but as it was I only read one post about a guy with Hodgkin's Lymphoma who didn’t tell anyone, not even his fiancĂ©e. Subsequently, his entire life fell apart. The take home message – some people do need to be informed. 

Due to some freak arrangement in the planets and their moons (clearly the only reason), I had mentioned to my parents in November that I’d been feeling unwell for a wee while and had an unresolving chest infection. Another astrological intervention led to a WhatsApp message to my Dad the morning of my hospital admission, in which I remarked that I was feeling particularly ‘poorly’ (for any British readers out there – I can’t have it all being Kiwi lingo). From this point they were updated regularly, thanks to some gentle prodding from my husband, and were pretty much left to deal with the fallout in NZ. But, and here lies the first of many mistakes, I had instructed my folks not to tell my sisters. One sister is aware that I have been unwell but will worry if she knows; the other is on her honeymoon en route to New Zealand so there is no need to bother her. Although the diagnosis was not official until a week or so after I was discharged, five days into my hospital stay it was pretty much confirmed as they had moved me to the cancer ward. Anyway, I digress, back to the story.

Essentially one sister was phoned out of blue to say that I was in hospital and I probably had cancer. I didn't make the call. The second sister and her husband turned up at the Picton ferry terminal, 6am in the morning, three days before Christmas having not seen my parents in over 18 months, and at some point, during the two hour car journey that followed, was informed of the news. Regular contact does not necessarily mean communication because she and I talk often and I had never mentioned that I was feeling unwell.

Having successfully dampened my family’s Christmas, my husband and I set about ruining that of my in-laws. In an attempt not to destroy their Christmas, we had decided not to tell his siblings until Boxing Day. Withholding information worked so well the first time around, let’s do it again! Unfortunately, due to time zones (another astrological event!) it was Christmas morning in New Zealand, Christmas Eve in the UK, so I had just been discharged from hospital. What followed was a skype call that belonged in Curb Your Enthusiasm. Awkward. I kind of hope the government was spying on it, just for the comical value. Perfectly reasonable questions from my husband’s family - “Where is your drink guys, it's Christmas Eve?” “Ah urm…..” silence, “Are you going away for the Christmas break?” (We’d just cancelled our Boxing Day trip to Amsterdam) “Ah…. Liv has to work” which, as we know, was a flat out lie. Throughout the conversation I am trying hide the oversized white bandage on my neck that is covering my biopsy site. Yay for video calls! Ten minutes after the call ended my husband gets a text from his brother. Obviously our act had not been convincing. Oh well, now they know. I guess what I am trying to say, in my longwinded style, is that if you’re lying in hospital with a possible cancer diagnosis hanging over your head, tell your immediate family. At least it is a warning for them. I did my sisters a great disservice by not informing them sooner.

So we move to friends and colleagues.  I was in a pickle. As I mentioned, the diagnosis was a forgone conclusion; the chances I didn’t have lymphoma were exceptionally low. But I didn’t want to say to everyone “I’ve got cancer” and then turn around and say “oh no wait I don’t. Sorry guys, my bad.” I mean what a dick. [My internal dialogue has accentuated the kiwi accent on the word ‘dick’ and I would appreciate if everyone else would also do so. It is one of the few words that is best said with a New Zealand accent.] I am not at all implying that anyone who has done this is a dick, because that is not at all the case. I am just trying to convey my thought process at the time. And, for another matter, if you know of someone who has done this, please understand what they were going through. It is very difficult. Oh, I believe that was my first lecture!

Another digression, I apologise, back to my pickle. I needed to make sure I wasn’t expected at work any time soon. A select few in the lab had been updated on the probable diagnosis. They all found out via text. Maybe one face to face. It was all very blurted and blunt. The phone call to my senior goes something like this “Hi it’s Liv, am I on the rota next week?..... Ok that’s good, well just to update you, I am still in hospital, I am under a haematology consultant, they think I have lymphoma - which, well makes sense really, and I guess at my age it’s probably Hodgkin’s, but I don’t know when I will be at work next.” Apparently he was mouthing ‘holy fuck’ to my friend sitting beside him. 

Other failures include a WhatsApp message to my mate in Australia: “Thanks for the Christmas card it lit up my day. Unfortunately I have ended up in hospital so the card has brightened up my bed area. You’ll be pleased to know my nutritionist is Australian.” (I can’t believe I used the word ‘brightened’. Yuck.) This message, at the time, made perfect sense to me. But you see my friend is pregnant and I had deliberately avoided telling her how crap I had been feeling, so it probably came as a shock to her. I was narcissistically assuming that everyone was aware that I had been unwell. Another fine botched example: on New Year’s Eve I got a text from a workmate “How the hell are you?” Well I am not going to lie, that backfired on Christmas Eve, I responded “Ermmmmm…..Still drinking, but it’s probably Hodgkin’s lymphoma” Thought process:

Ermmm – she is Scottish and I thought it was appropriate    
Still drinking – it is New Year’s Eve and she is Scottish so, you know, it’s relevant
Hodgkin’s Lymphoma – well it was and, as I said, I wasn’t going to lie

Maybe it could have been put more delicately, and quite possibly not on New Year’s Eve. Are you cringing yet? I have more. A phone conversation, which I had actually planned, was the quite possibly the worst way to tell someone that you have cancer. I started “How was your Christmas?” “Cool, and your trip went well? Did you get some snow?” Then, wham, out left field she asks me a question “How was your New Year’s Liv?” Wow, wow, wow. This is NOT part of the script. I am not prepared for questions. The true answer is we went to the Komedia to see Zoe Lyons, where I nursed one pint over two hours and played pathetic cancer patient number 1 because it actually hurt to laugh. My response was “Ahh errr well I have cancer.” We’ve laughed about it since. Next time I will write notes. I started warning people at the beginning of my messages that there was a shock to come. But I am 29 and I have been married for five years; they all think I am pregnant. I am still trying to decide if pregnancy would be worse or not.  

All these examples were either pre-diagnosis or necessary notifications. Now, nearly a month later, whom do I tell? What am I trying to achieve? Are people going to be upset if they find out after the fact? Because essentially I am going to come out of nowhere with an email that says “Hi, I know I have been really slack and we haven’t, like, spoken or anything for over a year, but well, as it turns out I have cancer. Oh, don’t worry it is totally curable and I will be fine in six months. In fact, you’d probably be none the wiser had I not told you.” Is that not just asking for pity and attention? People with chronic diseases don’t send global emails and they have to manage their illness for the rest of their lives. It’s not as though I am dying. I suspect my rationale for wanting (Is it want? Is that the Freudian slip I have been waiting for?) to inform others is entirely selfish, which may be why I am delaying it. Delay. Another Freudian slip?

Friday, 16 January 2015

Today I had my first chemo

Wow, that sounds like a title from something I wrote when I was like seven years old. Except the chemo part. No way could I have spelled that. I still struggle. 

So, mentally I was pretty unprepared for today. I did not realise quite how crap I would feel afterwards. I mean it will be some sort of miracle if I don’t throw up. I’ll let you know how I go. Something for you to look forward to. The ‘positive thoughts’ and ‘bright-eyed-bushy-tails’ attitudes that have been recommended to me, attitudes that I have been implementing, up until now, with a degree of success, can lead to an abundance of naivety. This seems to be the case with me.

Let’s get into it then. For starters I have picked up a cold. It is winter after all, a minor cold is to be expected. Although, I am slightly immunocompromised and my memory lymphocytes aren’t really working as they should, so the cold is taking a little longer to clear than it probably normally would. But the medical team were happy to go ahead with the chemo, so great. My husband and I had expected the appointment to last around four hours, however it ended up being more like nine hours. There was a pre-treatment briefing with all the legal mumbo jumbo (no ACC here so you have to sign your life away for everything), which we knew about and had included in our four hour limit. Then we had to wait around for the blood results (yeah sure, let’s blame the lab) because the pharmacy won’t release the drugs if my neutrophils are too low. Then we had to wait for the pharmacy. 

That took a couple of hours or so. I got to know the nurse quite well. She had lived in New Zealand for twelve years, owns a house on Waiheke Island and loves the Mussel Inn. We got along. The nurses were struggling with the radio so my husband fixed it, but he could only get the BBC classical music channel and I think everyone thought it was our choice of music and that we were really highbrow or something. Obviously we are not.  So we had classical music playing throughout our nine hours, which isn’t the worst choice, but certainly not my first.

By now the drugs have arrived and things start to move pretty quickly. The chemotherapy regime I am on is ABVD. It is given intravenously with some other supplements; some anti-nauseas, hydrocortisone and some other steroids. All was going fine and dandy for about thirty minutes or so until I got to the ‘V’ part. V stands for Vinblastine, which sounds like some sort of French wine explosive (yes I know I am meant to be a scientist). Anyway, the drug apparently goes straight into the central nervous system. All I can say is that as this drug is being infused, I am starting to feel pretty agitated. Wriggling in my seat, feet won’t stay still, kind of feel restless in my skin. And it’s hard to know right? Am I being over sensitive? It is my first time and you know you read and re-read and then sign that you’ve re-re-read and then get told in triplicate about the side effects, so is it the drug? Is this why I am feeling agitated? Or is it because I have been sitting in the same chair for six hours and probably haven’t eaten enough?

Whilst sitting there pondering this internal conundrum, the ‘D’ (D stands for dacarbazine) infusion started. The plan is for it to be infused over thirty minutes, and it is the last drug I need to be given. But when the infusion starts my vein begins to hurt. Like really really really hurt. When I had some fluids in December the infusion hurt a little, and it hurt a bit more when I was given some plasma, but this was well… it was just like wow. I am having flashes of how Harry must have felt in Requiem for a Dream. They say one of the drugs can hurt during infusion, so I’m thinking “is this the hurty one? Is this normal?” Yes my brain was using the word ‘hurty’. I couldn’t handle it, I was writhing. I wussed out and told my husband and the nurse turned down the infusion rate (Nurse: “Oh is this ‘The Flight of the Bumble Bee’ on the radio?” Me: “I really wouldn’t know”), which eased the pain but it didn’t completely subside so they turned it down again and the infusion that should have been 30 minutes long is now taking 1 hour 30 minutes.  

Then it is time to start getting itchy. And itchy and itchy. My right shoulder is itchy, and the back of my head and neck is itchy, and a small patch on the inner of my right thigh is itchy. The last place was a dodgy one to scratch. I have always been a pretty itchy person, so was sitting there mindlessly scratching away at my itches, when somewhere deep in the far reaches of my brain, two brain cells must have decided to have a little chat (or synapse for the nerds out there). Eventually they let the other cells in on what they’d been chatting about and kindly pointed out to my conscious self that it is really quite odd for my right shoulder to be itchy and red and hot to touch. Ok, I am now happy that this may be one of those pesky side effect things that I need to mention. It is no big deal, mild reaction - intravenous antihistamine cleared it up, but by now I am feeling crappy and itchy and hungry and I need the toilet like every ten minutes and I still have an hour and half to go and then because of this pesky reaction I need a chest x-ray afterwards. And in my hangry, pitiful state I have decided it is all my husband’s fault. Which of course it most definitely is not. But try and tell hanger Liv that. The x-ray was clear just for the record.





So having entered the hospital at 8am, we got home at 6pm. Thai for dinner was most certainly the wrong choice. Fatigue, nausea, restlessness, snotty nose and a strong feeling of disappointment are the main features apparent to me as I am curled up in bed feeling rather sorry for myself. I have kept the food down though, you’ll be pleased to know. I am sure no one wants to learn what regurgitated tofu green curry looks like, although I imagine it is probably not much different to what it first looked like.

Things I have learned today:
Add at least two hours to my expected time limit
I am going to feel crap during the chemo
I am going to feel crap after the chemo
I need to eat more
I need to bring food and water for my poor patient husband
We most certainly were the rookies of the day ward


(Written 12/1/14)