where to now?

Thursday 30th January 2014.
one year ago I was preparing for my mastectomy on the 31st. I must have been getting the boys' things ready for school, but I really can't remember much about that time, only the fear that something might go wrong and I might never see my precious boys again. I have always had a tendency to be overly dramatic.

Today I'm lying on my bed, feeling nauseous but alert. David is playing Clash of Clans on the iPad beside me, and Nathaniel is playing elsewhere, keeping as far away from David as possible, for some uncertain reason. I hate it when they get upset with each other, though they've been remarkably good over theses holidays, which end next Monday.

I've been out of hospital since Saturday, after spending 3 weeks there - admitted after having a reaction to a blood transfusion. I hope I never have to return. I'm so tired of being in hospital, the uncomfortable beds, being woken during the night (the good nurses manage to come in and take obs and change drips without waking you), and, in my last room, the incessant, mind-numbing chatter from the visitors to the next bed. Made worse by their racist ignorance ("Melbourne isn't Aussie any more. You can't read the writing on the signs in the shops in Springvale, and when you go in, they look at you with slitty eyes. It's much better in Queensland, in the caravan park in Caboolture, at least they're still Aussie there." I tried not to listen, but some words are so vile the cut through Kevin McCloud's dulcet tones and burn themselves in your awareness. My blood pressure rises again just thinking about it. Maybe that's why I developed nausea and vomiting? My last couple of days were quite unpleasant because I had no appetite (it's hard to eat when you feel like chucking), and I tended to bring up whatever I ate. It may have been the Flagyl they'd put me on - an antibiotic that can cause nausea and vomiting, not that it has for me before. Things have settled since then, thankfully, and I've even felt hungry on a couple of occasions. I've decided that nausea and pain can both have significant effects on mood - I've spent a lot of time in the last few weeks sleeping to avoid the nausea, though I've also been tired, and need to have a nap again now, at 11 in the morning!

Friday 31 January, 909 pm

Ben is reading to the boys in their room next door, after they sat in bed with me watching 'Hoodwinked Too' on tv , a  movie I haven't seen before.

It hasn't been the easiest day. We had haircuts scheduled for 945, but Nathaniel dug his heels in about leaving, and mum had an appointment at 10, so she couldn't hang around for us to get ready when she came to collect us. I called a taxi, but it didn't come in time, so we ended up rescheduling the hair until 315, and now David, Nathaniel and I have new haircuts (mine being a no.1 clipper all over). Being down in the town allowed us to meet Ben for dinner at a new Indian cafe called Cinnamon, at the Jimmy's complex, and I ate more than I have in ages - a masala dosa isn't a huge meal in itself, and I didn't eat much of the potato component (Nathaniel was a willing recipient, so much my father's grandson), but the coconut chutney, dosa, and dahl were great. I love going to new Indian restaurants, where you may have a chance of influencing the menu - they made the dosas from scratch for us (cheese ones for the kids), and they're open to the idea of pani puris, though maybe not kheer, which takes a long time to make.

I'm feeling achy tonight, probably from the GCSF injections that I have to have each day. At least they're having the desired effect on my blood counts, so I'm hoping to avoid any further admissions to hospital.

I had my repeat breast ultrasound and mammogram on Tuesday. I haven't heard back on the results yet, so we're assuming no news is good. I suppose if there was cancer in my remaining breast, I'd have it removed. I'm just not keen on going through chemo again, don't know if my bone marrow could cope with it. I'd have to adopt a strict anticancer diet, which I'm trying to anyway - it's just hard to find the motivation and energy to cook when feeling unwell and your blood pressure is low - I feel dizzy if I stand for too long (e.g., as long as it takes to stack the dishwasher, put away the dishes, or fry a couple of eggs).

I'm glad it's the weekend, but not glad that school goes back on Monday - I need to cover the boys books, label their new clothes, and come to terms with the fact that I've missed nearly 4 weeks of their holidays. They seem to have had a good time, with a bit too much playing on the iPads and computers, and not enough time swimming or playing with friends. I'll get through this, and there will be plenty of time for beach holidays and time with friends.

I'm starting to think that I might be okay to drive again soon. My scotoma isn't bothering me, and I'm feeling better as a passenger, but the rules say no driving for up to 6 months after brain surgery (taking me to march), and probably a similar time after a seizure (taking me to June). Launceston's small enough for taxis to be relatively affordable, but taxis aren't great for school drop-offs and pickups, and there's only so many times we can ask friends to help. Ben's going to try to manage it, going back to work afterwards. I think I might start to go mad from being alone. I'm going to embark on a fitness program (stairs, treadmill, light resistance work), which will hopefully lessen my fatigue and improve my concentration. I find it hard to remember appointments even when told them 3 or more times, and I rely on my diary to help me remember. I don't know when I'll be competent to return to work. Impairments in memory and concentration are not compatible with the kind of work I used to do, and I still get fatigued so easily. I'm going to try to stop sleeping so much during the day, and to use exercise and seeing people as a way to cope with this, rather than escaping through sleep.

It's freezing inside tonight. Ben and I have a silly dance where he comes home and turns the air conditioner on to 18 because it's hot outside and he's wearing a suit. I turn it off because I like being warm (but not too hot) in summer. In winter, he comes home and turns the heater up from 18 to 22 because it's cold outside and he wants to wear shorts and a singlet in the house. Such a  silly routine, at least we don't waste energy arguing about it - we just keep turning the A/C on or off, depending on our preferences.

I'm still spending time meditating each day, and am finding that I feel calmer and better able to cope as a result. I can't, however, cope with other people being cranky, I feel my stress levels rising when they are, so I've spent a lot of time in the holidays trying to teach the boys not to wind each other up or call each other names. They're getting better at it, thankfully. I can't bear to hear Ben or the boys arguing with each other, I need them to be happy and having fun, not calling each other names or getting cross. Ben says I have a pathological need to avoid conflict - he may be right, but I believe I have a  strong and healthy need to avoid stress at the moment. It's been a difficult year. One year since I had the mastectomy, 4 months since the first craniotomy, and two years in February since Dad passed away. It all seems so strange and distant, I'm feeling detached from everything that's happened. Not quite sure what to do next, other than get fit and healthy again. And turn off the air conditioner before I go to sleep.

Up in the ward

Feeling much better today after 2 nights in DEM on IV fluids and antibiotics. I'm very fond of the plaster room now. The door can be closed, permitting a little more sleep, but I've also developed strategies that help- covering my head to keep the light out, not opening my eyes until I'm spoken to, and snatching sleep whenever I can.

I had some rather amusing dreams as a result- tiny animals having Christmas dinner in Eakins Hall at Queens College, where I spent my first 3 years at Uni. More cute animals on surfboards... Nothing deep and meaningful, just sweet fancies from my subconscious, perhaps a reward for giving my body the sleep it needed. 

Tonight I'm in a 4-bed ward on 5D (oncology). The neighbours seem quiet so far, the poor man next door is about to have a cannula put in his hand- the sounds of the tourniquet clip, the nurse tapping his hand, now repositioning him because she couldn't find a vein- I didn't realise how anxious I've become about the needle thing. He's not complaining though, and I've put the tv speaker by my ear. 

Mum just called, wanted to chat about gas hot water- I'm totally pooped now. Frustrating how I can transition from feeling alert to exhausted in a matter of moments. But every day is getting better. Rest now, more later

MET call

JThe dramas continued today. After working well for a potassium infusion last night, my infusaport stopped working this morning, and the nurse has trouble getting blood from it. He couldn't get enough blood for the required tests, which meant they had to try again.This time, they couldn't get any, so they asked for a nurse to come from the chemo clinic. While we were waiting for that, my BP dropped to 78/60 or something similarly low, which was enough to trigger a MET call- basically, a number of doctors came and asked me how I felt (dizzy and tired) and they spoke about giving me IV boluses of this and that... Only problem is, my port wasn't working and I didn't want to be cannulated on my right arm because it's been done too many times, too painfully, and I just want to protect the veins there for any blood tests. The left arm is still off limits because of the lymphoedema risk.

So this lovely ICU physician was gently feeling my arm, looking for veins, sensing my discomfort at the thought of being cannulated again- and then there was a code blue elsewhere in the hospital, and they all disappeared, leaving me to my nurse .

Another nurse from the chemo clinic came, tried to get the needle in my port to work, but it wouldn't accept the saline flush, or let any blood be drawn up. So the needle had to come out, and a new one went in. After some fiddling to

Get it in the right place (which luckily didn't require reneedling), I then had to try various positions (flat, sitting up, looking left, looking right, breathing deeply, raising my arm, lifting my chin) before the blood finally flowed. So much trouble to get transfusions, but better than having a cannula.

My haematologist came by today and said I'm to have gcsf shots every day, because even though my bloods rise rapidly afterwards, they also crash again very quickly, so they idea is to keep them up until they can stay up

Themselves.

So I'll have that ache in my thighs for company for a while.

I don't know if I'm in denial, or if there's something I'm not being told, but I don't feel too bad, and I feel like my brain tumours have succumbed to the treatment. It's just disconceeting to have a circle of doctors smiling at me with concerned looks on their faces. I don't really like it.

Must try and sleep now. Feeling very tired.

Ins and outs

I'm back in the emergency department tonight with gastro symptoms. I haven't been feeling great since I got out last Thursday, have just wanted to sleep all the time, not much appetite and feeling nauseous , but my bloods had improved, and I wanted to be home. I miss my boys so much ( even though they woke me repeatedly today to see if I was ok and to tell me they love me.

I hope I won't be in too long this time. I was beginning to feel like I could see the light at at end of the tunnel.

Good news at last

Preliminary bone marrow results don't show anything nasty. Drs now looking at medications for possible side effects. Have to stay in on IV antibiotics for 5 days, plus regular GCSF injections. :)

Thursday January 9th

It's a beautiful sunny evening. Ben and the boys have just left, after being here nearly an hour. The kids are tired after another day with mum, and while nathaniel gave me lots of wonderful 9yo cuddles, David was upset because I'll be here for another 5 days- he demonstrated his distress by picking on nathaniel, pouting, and being generally surly while absorbing himself in games on my phone.

I'm very thankful that the results of my bone marrow biopsy haven't come back today. I'd rather sleep well tonight, not knowing the results. They can wait until tomorrow.

I decided today that patients need to be approached cautiously , as you'd approach a wounded animal, slowly, carefully, with a hand outstretched, until you know how they are feeling that day. The gleeful, efficient enthusiasm of many health practitioners can be irritating to the patient, making it hard for the patient to say exactly how they feel, to express their fears and concerns, to feel that it's okay to be uncertain or afraid. So-called behavioural problems in elderly, confused, or demented patients may simply be irritated responses to high-energy cheerfulness from staff, whiich can be over stimulating ,where smiles may see like smirks, and promote paranoia rather than a sense of being cared for.

It's been wonderful to see the way my former colleagues love their jobs, but it would be good if nursing and allied health staff could learn to be like seasoned medical consultants, whose demeanour is usually appropriately serious at first, but can lighten when appropriate.

I use humour as a defence, and engaging in verbal banter helps me pretend that these people are still my colleagues, that there's nothing wrong with me. My energy to maintain these defences is diminishing.

I hope to recharge my batteries with a good sleep tonight 

Love to you all

Today I discovered that there are two things I don't like: pain, and not understanding something.
The pain at the site of my new infusaport, and where the catheter tracks into my jugular vein, has lessened over the day, but I woke up with a very stiff neck, from having tried to guard it overnight as I slept. At least I slept well, but it's not fun to wake up with a stiff neck, and then to have to move it and deal with the emergent pain. I can't walk around with a hunched neck though, so I gently unhunched, and managed it with regular pain relief, and two walks down the long corridor and back.

As for the things I don't understand: I'm not worried about having the bone marrow biopsy tomorrow, I can cheerily submit to medical procedures, such is my perhaps foolish faith in the medical profession.  The thing that worries me is what the results might mean. I don't understand bone marrow disorders, I only understand that the bone marrow produces various blood cells, that chemotherapy, and other drugs, and other conditions, can affect the bone marrow, and that mine is not working as it should at present. I had two units of blood yesterday, and while my hemoglobin improved from 66 to 90, my platelets from 78 to 83, and my white cell count from 0.8 to 1.2,, my neutrophils dropped from 0.3 to 0.1. They were at zero on the third, so it was exciting, for one day, at least, to have the, at 0.3.

I've had a good day, otherwise, with an old friend visiting, and a call from another. They both have an uncanny knack of lifting my spirits, and of making me forget about my worries. There are several people who have this ability, and I'd love to call them, but the tears and fears are just below the surface, and I know I'd start crying if I called them. I cried when my nurse came in this morning, and she started crying too, saying I'd been so brave. I don't want to make other people cry, so I'm going to have a good cry in private and get it out of my system. Then I'll say some mantras, which are bringing me great calmness and focus, and then I'll go to sleep.

It's hard though, there are s many people I want to contact, to tell them how much I love them, how much i miss them, how much I wish I was healthy ,so I could just call them or see them without vine held,back by fatigue, nausea, neutropenia, distance. I think my maudlin state of mind is partly affected by having a friend with lung cancer who has been given 3 months to live. She looks just like she always did, apart from the breathing apparatus, and it's hard to believe that there's something in her body that's killing her. It's so unfair.

I'm not dying. My brain scan was clear. There's something wrong with my bone marrow, we don't know what it is now, but once we know, we'll be able to treat it.

We've dropped quite a few of my medications to try to eliminate pharmacological causes for bone marrow suppression. I've even stopped taking my supplements, just while I'm in hospital, to try to make things simpler.

Reciting the Tibetan mantras is helping me to focus on good health, healthing, overcoming obstacles, and achieving enlightenment for all sentient beings. It's helping to drive away fears and doubts, and to give me something to focus on.

Doing the mantras brought back a long-forgotten memory, of when I was an intense, book loving 8-year old, who was very concerned that people should read the bible and say their prayers, so that they would be kinder to other people and animals, and so that they would make the world a better place. I asked if we could say the Lord's prayer in class, and the teacher thought I was asking that we sing the version that was popular in 1975. I didn't know it, no one else did either, well, not in full, and the song fizzled out, and the verbal and nonverbal responses from my classmates taught me to never talk about prayer in public again, unless I wanted to be laughed at.

Pity, I've held the same desires to help other people and living things ever since, and it may nhave helped me if I'd kept up a regular spiritual practice since then. Better late than never, I suppose.

My iPad battery is running low, and is likely to crash, so I'll say goodnight, and correct the typos tomorrow. The cursors playing up


I've had a good day, with on old friend visiting

Venting with some humour

Forgive me for starting off with a vent. I'm still in hospital, receiving potassium and magnesium infusions tonight after an  uneventful unit of blood this afternoon, and ahead of a new infusaport (in the old site, below my collarbone) first thing tomorrow morning. 

I'm feeling fed up with being a human pin cushion. I've had two lots of blood taken today, my old cannula started leaking and was removed, and it took two attempts to get a new one in: the first in the small veins in the back of my hand, the second in the vein on the inner side of my wrist. Both are painful places to have needles inserted, but the pain doesn't last long, and I'm feeling better after the IV antibiotics. I want to continue to feel better, so I'll accept and tolerate any treatments they say are necessary. I am beginning, however, to get a bit bollshie in querying the reasons for such procedures.

I am so bloody sick of all this, I'd just like to take a rest from it all. I can see why some patients refuse to have further treatment, and I respect that. I'm not going to give up, I finally got through my PhD in 7 years, I'm going to get through this. 

Sleep is a good refuge, and I've been sleeping well in here and having lots of dreams (including one in which I was sparring with Snow White (from the third Shrek movie),possibly because I was annoyed with her self-satisfied perfection and ability to sleep undisturbed for many hours. It was an enjoyable dream, partly  because I was winning, and partly because it allowed me to vent my frustrations on a fictional character who I'd admired as a child. I don't identify with the Disney version any more, too sweet and passive. If I'm Snow White, I need to be the tough fighting version who goes back to vanquish the wicked queen. Or maybe my dream was taking out my frustrations on the mythical promise of fairy tales, of "happily ever afters" that don't always come true. We were sold a dud, a fantasy to help give us hope that things would turn out all right through true love's first kiss, or the magical intervention of a fairy godmother who would reverse the unfairness and drudgery of a Cinderella existence and see you whisked away to a life of ease in the palace. What crap! Superficial stories to disguise the inherent, random, unfairness of life, and to keep little girls growing up imagining that a handsome prince would save them, rather than encouraging them to save themselves!

Here's a good one for you: to cheer you up: Did  I tell you that my MRI was good on Monday?  (Cue fireworks and the third  movement from Beethoven's 9th- Freude, schöne, götterfunken, tochter Aus Elysium, wir betreten feuer-trunken, himmelsche dein heilichtum - I'm going to sing it in my head for the rest of the night.)

It's now 3am, I started this post around 930 last night. Sleep was good, until my bladder and bowels conspired to wake me. I resisted their call from the warm place I was in, until my drip tower started beeping - the magnesium infusion was over. Two more units of potassium to go, itchy eyes from the magnesium and potassium I've already received, and then a sting in the tail, literally, after going to the loo. It seems that potassium infusions don't only sting your veins as they go in, the mineral also stings elsewhere as it goes out. Ouchy!

Grumbling aside, I know this is just another glitch, and I hereby declare that the new year now starts for me on January 17th, the anniversary of the ultrasound that started this series of events. (Though I'm still happy to receive any benefits 2014 may choose to bestow before then).

Does being described as an "interesting patient" count as a benefit? 

The anaesthetist told me he advised his students to never become "interesting patients". My neuropsychology lecturers also told me to avoid that phrase in reports: it may be true, but it makes other patients sound less interesting - summons up images of neuropsychs being bored by uninteresting cases - not something I can recall experiencing. Every case, and their family, was unique, and while some were more complex than others, all were interesting on some level.

I can't type any more on my iPhone, the screen is too small for my blurry vision, and the extra potassium isn't helpng.

Think of me tomorrow morning as I'm "first cab off the rank" to get my port inserted under a general anaesthetic. My first, and hopefully last, for the year. 

Much love and gratitude to you all.