Showing posts with label hodgkin's lymphoma diagnosis. Show all posts
Showing posts with label hodgkin's lymphoma diagnosis. 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?

Thursday, 15 January 2015

Quick Background

September 2014 
I have just turned 29 and my husband and I have begun our fourth year of UK life. I am working in a haematology lab at a hospital 10 miles from our Brighton flat. I’ve had the job for 4 months or so. Prior to that, I had been commuting from Brighton to London every day. Yes, I was one of those. I am sorry. I hate it as much as you do. My job (or career, call it what you will) is to analyse blood. I look at the numbers produced by the analyser, I look at the cells via a microscope, and then I think about the medical explanations for what I am seeing. My current hospital is not a bad place to work; although the analysers and systems are outdated they are, at least, about to be replaced. I get along with most of the staff, I have even made a couple of friends. I have learned a new speciality and the job itself is not so hard.
But I feel exhausted. I am asleep on the couch by 7pm. Once in bed, the bouts of uncontrollable shivering and intense lower back pain beginging from a vertebra behind my pelvis and radiating in both directions – are leading to rather restless nights. Ibuprofen is becoming a regular part of my daily routine. Some work friends have started asking where my previously totally awesome attitude has gone. Ok, maybe it was never that awesome. Let’s just say my crankiness hadn't, as I had hoped, gone unnoticed, and requests are being made to lock and load a good PMA (positive mental attitude). 

October 2014
I am finishing work breathless. I stop cycling to work as I am too tired to maintain it. I commend myself on my notable weight loss just from my casual cycling to work. Good for me. The shivering at night is becoming a little more frequent. I hide under a lab bench and fight off tears when an analyser doesn't do as I want it to. Maybe I am taking things a bit too personally. I decided to give blood (why did I think that was a good idea???). I can’t give blood because I am anaemic. I book a GP appointment. I get a cold and a cough.

November 2014
Night shivers are every night and most afternoons during work hours. I am a zomboid at work. Weight loss is being noticed by other people. However, my life is almost sedentary and I have no appetite. My cough has not resolved but I am not coughing up anything nasty. I get a gum infection. I get a chest infection. Antibiotics are not helping my shivers, and I am starting to sweat during the night. My husband has taken to sleeping on the couch because I am disturbing him too much. Third GP visit and I get to have a chest x-ray. 

December 2014
The only work out my gym clothes are getting is during the night to mop up my sweats. I am changing my shirt 3 to 4 times a night. My rigors are six hourly; or whenever the ritual paracetamol runs out. I can take paracetamol now because I have lost my desire for beer. Shit, I must be unwell.  A change in antibiotics has not relieved any symptoms. Coughing doesn’t produce anything except a need to vomit (sorry guys, but I am sure this blog is going to get grosser). And is that a dull pain in my right side? Yes, I think that is a dull pain in my right side. How long has that been there? Maybe a while – I can’t really remember. Another call to the GP. A trip to A&E. A reluctant trip. 

Hospital
The fever I claim to have is a whopping 37°C but my reliable blood results (yay that’s my job) do confirm that I am not quite right. A pretty clued up young triage Dr decided my abdominal pain didn’t make sense so sent me for an ultrasound. My liver was red on the ultrasound, which I thought meant angry (oh no my beer!), but no. Red means blood flow and, as it turns out, the liver wasn’t red enough. They suspect a liver abscess. I am assured that this is unrelated to alcohol consumption. I am assigned to the surgery team. 
A CT scan is performed the following day. My overnight shivers freaked out the surgical based nurses, and were not overly appreciated by my ward mates. About 3 days later a rather brisk but likeable surgical consultant with a paintbrush moustache bustles into the ward followed by a cluster of junior surgeons. “I need to feel your neck, armpit and groin.” Me – “Oh? What is it, lymphoma?” Paintbrush moustache -“What? What do you know about lymphoma? Are you a doctor?” (Fortunately a nurse here filled in the blanks for him) Paintbrush moustache – “Ok well the CT scan shows swollen lymph nodes in your abdomen I need to refer you to another team. Is it the haematology department?” Me – “Yes it is haematology.”

OK, so it is my job to know about lymphoma, but I must confess that lymphoma was a weak point in my knowledge. Here is what I did know:
I knew at that point that I probably had lymphoma. Fatigue, unexplained weight-loss, night sweats, alcohol induced pain, itchy skin: the symptoms all matched up. The only thing missing was a visible swollen lymph node.
At my age I was most likely to have Hodgkin’s Lymphoma
Hodgkin’s Lymphoma has giant cells (Reed-Sternberg cells) that have two oval nuclei that look like owl eyes when you see them down the microscope and they look really cool (OK I had to nerd out a little…)
Hodgkin’s Lymphoma was probably the best cancer to have.  

This entry is much longer than I had planned, and the rest will probably be summed up in later posts, so I will make it very quick – a CT scan, a bone marrow trephine, a bone marrow biopsy, a couple more ultrasounds, a lymph node biopsy, a plasma transfusion and a blood transfusion later; I was discharged at 8pm on Christmas Eve, and had a confirmed (by then it was all set in my mind anyway) Hodgkin's Lymphoma diagnosis the following week. On the first working day of 2015, I officially became a cancer patient.