1030pm, 28/4/2013
The worst thing about staying in hospital overnight is hearing the moans and tears of other patients, and not being able to jump up and help them. The best I can do (while receiving these IV antibiotics) is to call the nurse and make sure they're looking after the old dear who is in pain across the corridor. And to shut the door, so I can't hear her.
It's very hard to suppress the urge to help others and to focus on looking after myself.
Being in the patient role makes me feel much more vulnerable. Is it because of all the times I've reassured patients that we're doing our best to help them, while knowing that their situation is grim?
The thing that kept me going as a clinician was the hope that everything would work out in the end. I have to maintain that hope as I go through this.
While I'm here, I'll include something I wrote on the third day of my last hospital admission, when I was feeling very unwell, and hadn't had the benefit of being allowed home on day leave (I slept blissfully in my own bed for four hours this afternoon. Heaven!). I'm feeling ok this time, though tired, and I now have "tissuing" to add to my list of side-effects (it's when there's a bit of leakage from the cannula into the surrounding tissue. Ouch!) I've just been informed that my next Tazocin is due at 3am, so it's goodnight from me.
14/3/13
Day three in hospital, and I want to go home!!!!
I have a new and enormous empathy for people who have to stay in hospital for a prolonged time, where the discharge is dependent on factors not entirely under their control. My past hospital admissions have been for childbirth, where I was so high on endorphins I didn't mind where I was, and for the mastectomy, where there was a clearly defined discharge date. This time, I'm stuck until my white blood cell count rises to 1.0 (it was 0.1 on Tuesday, 0.2 yesterday), at which stage I can be sent home on oral antibiotics. Until then, it's IV ABs and regular observations and daily blood tests and hospital food.
I can't complain about the care I'm getting, the nurses are lovely, the doctors are kind and listen to me, the ward is quiet. I obviously need the rest and care, and this is the best place for me to be. The food is bland and unappealing - I wonder if the kitchen does it to encourage people to leave, or is it just my chemo making me a fussy eater? I'm glad for family and friends who can bring me tastier options from the cafeteria or home. The problem is, I feel trapped, and I suddenly understand how awful it must be for all those patients who are in here for months on end. Especially for the ones who are well enough to go home, but whose discharge is held up by the need to find accommodation, or to determine if they have the capacity to choose their discharge destination.
Some things I've learnt as a patient that all healthcare workers should know:
1. If a patient has been told you're going to see them, go and see them that day, even if it's only for a couple of minutes to introduce yourself and to say when you're going to see them again. Patients don't have much to do, and it's hard to relax if you're constantly waiting for someone to come and see you.
2. It would be good if there was some way of indicating that your use of the nurse call bell had been heard. You don't want to be a nuisance by buzzing too much, but sometimes it takes so long for them to come, you start to worry that they have all disappeared (silly, I know, of course they're with other patients, but it's just how your mind works)
3. Conversations at the nurses station and in hallways are very easily overheard, especially by people bored out of their wits and listening for the presence of their doctors on the wards
4. Nurses can make such a difference to your experience as a patient. Their kindness, willingness to engage in conversation, and sense of humor help enormously. There is a huge contrast between the nursing care I've had here (they've all been wonderful) and the stressed-out nurse who increased my anxiety after having David, or the one who was in such a hurry to get me out of the day procedure unit last year. As a patient, you can tell if someone is truly listening to you, or if they're just going through the motions while their mind is on other things. When you're feeling unwell, the latter approach just makes you feel more vulnerable, and less able to ask for what you need (you don't want to be more of a nuisance than you've been already)
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
