Life after cancer, coping with fatigue, and maintaining a positive attitude

I don't know if I'm ever going to feel "normal" again.
My life has been turned upside down, shaken around, and emptied out like my son's pockets before I put them in the washing machine. I've seen all the fluff and lint that has collected at the seams, I've seen the grit and grime, I've discarded the used wrappers and pieces of paper. The pockets are empty now,  but the school bag still needs to be dealt with, and decisions made about what to discard and what to keep.

Fatigue is an ongoing issue for me, and an unspoken source of concern for both of us. It seems that I need to sleep for one to two hours during the day for each hour of exertion or concentration, but then my nightly sleep is disturbed, with regular waking around 230 or 3 am, and I sleep in until 830 or even 1030 some days. I get my most solid sleep in the later phases, or when I have an afternoon nap - I sleep so deeply that my mind becomes aware of the fullness of my bladder, or the need to get up and prepare food for the family, but my body just wants to keep sleeping. It doesn't care about food, it just loves the feeling of being deeply asleep, and resents the nagging need to get up for any reason.

I'm told that cancer-related fatigue can last for months or years after treatment, and I'm wondering if it's realistic to contemplate returning to work anytime soon. If I can't find enough energy to get through my daily activities at home, how will I find it to go to work? It will just make me more tired and take away time that I should be spending on looking after myself and my family. My experience has made me painfully aware of how important they are to me, and the only way I'll can put a positive spin on my life as it slowly passes before my eyes is to promise to prioritise my children above everything else. Doing so includes prioritising my wellbeing, so that I can be a more responsive and less reactive person. I haven't been good at doing that, for fear of being accused of selfishness, but having limited energy means that I've learnt to be good at rationing my resources and activities, irrespective of what people think about it.

I'm so sick and tired of the ongoing effort to remain positive and optimistic. I need a good dose of company from my friends in Melbourne, but I'm afraid of spending too long on the phone lest it gives me another brain tumour, or causes a recurrence of the old ones.

A bit of sleep is needed. It's after midnight.

One hour later, couldn't get to sleep. I've done some Tebetan exercises, but they've only made me more alert, and more positive in my outlook.

I've been going through a dark patch since the siege in Sydney and the massacre at the school in Pakistan last week. It became increasingly difficult to feel positive about the future, and the pre-Christmas stress and fatigue in my little family unit has been unsettling. I'm so thankful for Nathaniel's ongoing ability to be cute and adorable, and also sensitive and supportive, and for David's increasing ability to be calm and reflective, despite the unsettling surges of hormones that are affecting his moods and energy levels. Ben is on leave for a couple of weeks, so I'm hoping he'll be able to unwind after a stressful year at work. I know that my health is also a source of ongoing concern for him, and that it must be hard to deal with my fatigue and lack of energy, which often translates into slowed thinking, and difficulty in multitasking, which presents as being distracted and sometime irritable. I try to stay calm and respond thoughtfully to my family, but I don't always succeed, and sometimes get cross with them. I know its unrealistic to expect anyone to have the patience of a saint, particularly after what I've been through, but I have to keep trying to be calm,patient, loving, and non-critical, because my family are so important to me and it breaks my heart for us to bicker with each other. I know bickering is normal in families, but I hate conflict and critical attitudes, and it's hard to stay hopeful and positive about the future when the kids are squabbling. I've threatened to move out or become a nun a couple of times when they won't stop it, they don't understand how much it upsets me. I have fought so hard so that I can be here for them, and when they're nasty to each other I feel despair about the future. I hope they'll continue to grow into kind , compassionate, and thoughtful young men, but I worry so much that this stressful time will affect their development and ability to have healthy relationships. I know in theory what I should be doing as a parent and a partner, and I suppose I shouldn't feel guilty for not getting it right all the time. Trying is the most important thing, I hope.

(A few days later)

I need to take things slowly and not attempt to do too much. I simply cannot do things as quickly and efficiently as before, and I need to prioritise tasks very carefully, giving highest priority to eating healthily, exercising by getting out in the garden or walking, and spending time interacting with the kids. That means most of the Christmas cards still aren't done yet, the tax papers still need to be submitted to the accountant, lots of other papers still need to be filed or completed, but all the bills are paid on time, and the garden is looking lovely. I trust that people won't mind if the Christmas cards are late, and the housework and filing can wait.

I'm exhausted, despite sleeping well last night, and deeply for a few hours this afternoon. I've had good long walks each day for the last few days, and I'm feeling stronger, but I hate this crushing feeling of fatigue,and the sense that I'm losing time through sleeping so much. I know that I need to respect my body's need for sleep,but I also need to feel like I've achieved something each day, that I'm not wasting my life, and this chance that I've been given to live after having a disease that usually steals lives so quickly.

I'm trying not to dwell on my mortality. I'm trying to be positive, but it takes so much energy to generate positivity every day. I need to talk to my friends more than I do, it helps me feel more positive. It's not good to spend too much time in my head. Even blogging is helpful, when I get around to doing it, but I've been reluctant to write recently because of the fatigue and my sense of guilt at not being able to maintain my energy levels and positive outlook. I know its possible to change one's thoughts and perception of the world, and I've done a pretty good job for the last couple of years, but I'm so bloody tired. I wish a fairy godmother would come and look after the groceries, cooking, and housework, so that I could rest and recuperate through gardening, talking to friends and family, and eating healthily.

I must sleep, so that tomorrow can be another good day, like every one has been for the last week. I think I'm just getting sentimental because of Christmas, and the difficulty in seeing everyone I want to see ( which is everyone!).

I promise I'll accept my need to sleep, and to stop worrying that my fatigue means something dire, or that I'm wasting time in doing it.

I hope you've all had a happy Christmas and that the New Year brings good health and much love and contentment to all of you.

OT driving assessment

I passed the on-road test today, after passing the off-road test with flying colours last week. I feel exhausted. It was very stressful to drive again after 15 months, and to be worried about cars, pedestrians, keeping in my lane, and obscure road rules with a driving instructor sitting next to me, and an OT watching everything from the back. 

I'm relieved that I passed, but I know I'll have to be very alert and vigilant when I drive, even for short distances. 

I just want to go home and sleep now, but I need to drag the boys away from playing a computer game called Destiny with their cousin, get them down to the CBD for a celebratory lunch, and take a taxi home. 

Stool feeling shocked and sleep-deprived after yesterday's tragic siege in Sydney. So sad for the families and loved ones of the people involved. So glad to be alive and recovering.

more peripheral neuropathy?

Hi
the pins and needles feeling in my right hand has decreased, but there still seems to be some sensory loss. I'm wondering if it's a new peripheral neuropathy, or if I should just go and get a massage. My oncologist hasn't responded to my email, so I might call him later.

This is very annoying and slightly stress-inducing. I know I have a serious brain condition that could come back and bite me at any time, but I don't want to spend the rest of my life worrying about it. I have so many better things to do. Like planning and taking holidays with my family, enjoying time in the garden (the roses need dead-heading and there's mulch to spread), seeing friends in Launceston after too long a break, talking to family and friends interstate (though I'm now avoiding holding cordless or mobile phones next to my ear, as I don't want any electromagnetic radiation to spur new tumour growth)... A lot of the things I need to do are mundane, like putting the laundry away, but it causes a sense of chaos if they don't get done. Ideally, I'd like to do important, high-impact things, like communicating with the people I care about, getting my students' research projects published (there should be at least 7 papers in total), writing stories for my kids, maybe writing a book - but the mundane things need to be done as well.

I try to turn household tasks into Zen meditation sessions, where I become absorbed in the task at hand, and eliminate worry and ruminations from my mind. That's easier said than done. My life is running in slow motion before my eyes, and I keep getting stuck on things I could have done differently. Like not spending so much on renovating our house in Melbourne. I need to re-route the tracks so that I think about things that I did well, but I don't get much pleasure from that. I prefer to remember enjoyable experiences, like holidays or catching up with people. I can't change the past, I can only affect the present moment, and hope not to repeat mymistakes in the future.

It doesn't help that I have become painfully aware of my personal foibles in recent months. I've realised that I can be not that pleasant to live with, but I'm trying to practice patience, loving kindness, and mindfulness so that my perfectionistic tendencies don't have a negative impact on anyone, especially my family. It's a struggle! As a friend said yesterday, there are mental scabs that we can keep on picking, but if we want them to heal, we have to leave them alone.

Half the day is gone already. I've printed out the school reports, had some breakfast, and prepared a pet insurance claim form to send off. I've collated all the terminal illness forms, but need a bigger envelope for sending them, and someone who is not my spouse to sign as witness.

I need to keep focussed on the to-do list, and forget that my time on earth may be prematurely cut short. That's how I functioned before the GBM, it's how we all function. We know that we'll die some day, and that it could be sooner than expected, but we pretend that we have all the time in the world. If I acknowledge that I may not have all the time in the world, I start to feel a bit like Chicken Little ("the sky is falling!"). I need to take a deep breath and file thoughts about the unknown future away, and just keep focusing on what I need to do right now - especially with school holidays and Christmas coming!

I'm at peace with the thought of dying, whenever it happens. I know that Ben and the boys will be okay if it happens in the next few years, and that I will always be in their hearts. I'm not in any hurry to do it, and while I'm grateful for being alerted to the finite qualities of this life, I also think that fate was a little rude in making me so acutely aware of my mortality. I just have to make the most of the opportunity, and navigate a serene path through the mundane and meaningful aspects of experience.

Off to post that claim form. I have the first part of my OT driving assessment on Friday (the off-road, driving simulation component), and the on-road test on Tuesday. Fingers crossed that I pass, and that I'll be driving again for Christmas

Pins and needles

I've been getting pins and needles in the little finger and ring finger of my right hand since yesterday. There seemed to be similar sensations in my right foot and jaw/lower face. I've emailed my oncologist to seek his advice.

It's hard not to be a little paranoid about it, but better to be alert than to leave things unchecked. 

I hope I've just pinched a nerve through sleeping awkwardly, but I'm not in any pain. I'm due for another MRI in January, I'm hoping it will continue to show improvements.

This is all very ironic because I read a bedtime story to the boys last night about some sailors who were shipwrecked on an island inhabited by beautiful women who fed them wonderful food. When they asked the women why there were no men on the island. The women said they'd all gone away. The sailors never wanted to leave,until one night,a sailor heard someone talking outside his room, and he looked outside to see some goblins, who were saying they needed to feed the sailors until they were nice and fat, and then they'd feed on them. 

The sailor told his shipmates, and they all prayed for help from the gods, which came in the form of a winged horse, who was to carry them all away. One sailor didn't believe that the beautiful women were really goblinsin disguise, so he refused to leave, no matter how much his friends pleaded with him. As the giant horse was flying them away from the island, the sailors heard their friend calling to them. He had seen the goblins preparing a big pot for their feast. He wanted to be rescued. 

The moral of the story, conveniently included in the book, was that it's sometimes hard to see that you're in a difficult situation, but that you can't fix it if you don't acknowledge the reality.

It would be nice if a winged horse would come and take all my problems away, but all I can do is keep meditating, staying grounded in the present, and hoping for good health and happiness for every sentient being. As well as eating healthily, exercising, maintaining contact with friends and family, and taking my medications on time.

I'm hoping this tingling is just transitory, will see if I can fix it with a massage.

Take care, and thanks for reading.

Life after the conference, a summary of dietary tips, and reflections on looking back

I think my presentation went well, and I hope I managed to cover the key points that I wanted to make. It was such a rush to trying to convey something meaningful in 30 minutes, even though I used the "less is more" approach in doing my sides.  They had to bring extra chairs into the room, and people were standing at the back. The audience gave an enthusiastic round of applause, and a number of people said very kind and reassuring things afterwards.

I felt exhilarated for the first day or so, but then was hit by a bad case of post-presentation doubt. Even though I tried to stay on topic, and didn't include many details of my treatment, I felt like I'd exposed myself and done a metaphorical naked lap of the quadrangle back at Uni, with friends, colleagues, and strangers looking on. 

I felt so compelled to give the talk and share the insights I'd gained as a clinician-turned-patient, that I didn't anticipate how I'd feel afterwards. I was simply focussing on getting through it, and not what would happen next. A bit like having treatment for cancer, really. 

Looking back has made me realise that I was very ill last year. I was talking to a friend who is a GP yesterday, and she winced when I said I had pancytopenia at the end of last year. Her expression made me wonder exactly how ill I was. I'm not going to do any reading about pancytopenia (when all of your blood counts, including red blood cells, are low), but I guess that my need for four or more blood transfusions, a three-week hospital admission, insertion of a new infusaport for administration of all the blood, fluid, antibiotics, magnesium, potassium, and whatever, suggests that I was pretty unwell. I was a little worried when they did a bone marrow biopsy to exclude nasty haematological disorders like leukemia, but I didn't have the energy to research things, or even to worry very long. It seems that the Temodal, used for my brain cancer chemotherapy, caused a prolonged and severe pancytopenia, probably because my bone marrow had already been weakened by the six cycles of breast cancer chemo beforehand. 

Don't take your immune systems for granted, gentle readers. I didn't nurture mine enough before or after my first diagnosis, I kept thinking that cancer wouldn't happen to me. It happens to one in three men and one in four Australian women. Pretty rotten odds of getting cancer sometime.

Educate yourselves about what you can do to reduce the risk, and don't be overwhelmed by the amount of information out there. The basic facts seem to be that cancer thrives in an acidic, oxygen-depleted, glucose-laden environment. Many sources recommend steps to make your body more alkaline (less dairy food, apart from fermented dairy products; lemon juice or apple cider vinegar in water each day), plenty of water and regular exercise to maintain hydration, remove toxins, and have a well-oxygenated body; and go for a LCHF (low carb, healthy fat, ketogenic diet). Eating lots of green vegetables, beetroot, cruciferos vegetable (broccoli, cauliflower, Brussels sprouts) and limited fruit (fructose becomes glucose in the blood). 

I'm not an expert in this, and not qualified to recommend specific strategies to reduce cancer risk, but these are suggestions that appear repeatedly in the reading I've been doing. Such dietary changes are difficult to achieve for many people, but they are worth it if they help keep you healthy.

This link, from Brain Tumour Alliance Australia, includes an unofficial summary of a recent brain tumour conference. The notes on life after brain tumours and rehabilitation were particularly interesting to me. 

http://tinyurl.com/lmdcf7c 

Yet again, I realise how fragile life is, and how lucky I am to be relatively fit and well and free of major cognitive or physical impairments. I'm not going to allow myself time to look back on what happened and what could have happened. I need to focus on enjoying the present and setting some new goals for the future. It doesn't help to think about what happened, or to wonder exactly how sick I was. That time of daily injections to boost my bone marrow function, and twice weekly blood tests, is over. I'm getting healthier and stronger each day. I'm going to be here for my boys for as long as I can.

I must sleep now, I'm tired after getting the groceries with mum, and the boys will be home from school soon.