Venting my spleen.

Monday March 24th.
I visited the new Cancer support centre near the hospital last week. It's a lovely building to spend time in, surrounded by beautiful gardens - I was supposed to go back for an art group from 10-12 on Friday, but I've only just remembered, and I had the cleaner here until 10 today anyway. I'll go next week.

At the centre, I had a good long talk to one of the staff, and I told her how I thought they needed to integrate better with the clinic at the hospital, and that I thought one way of doing that would be to make appointments for all new cancer patients receiving treatment to visit the support centre with their carers, so that the patients/carers don't have to take the initiative to go there themselves. Another appointment at the end of treatment might help with the transition from treatment to survivorship. I was relieved to discover that I'm not the only one who has found it lonely and difficult when I did some research last week.

Another topic I'm going to read up on is the reasons why people sometimes find it so hard to keep in touch with people who are ill. As the person who has been ill, I've tried to make regular phone calls to a select few people, and to return calls that I've missed from others, but I haven't been on the phone every day. Long conversations can be tiring, but I still love to listen to others' stories.  At times, I think of calling someone, then can't summon the courage because it's been so long, and I get a lump in my throat and tears in my eyes at the thought of what to say to them - I don't know who is reading this blog regularly (other than Barbara, Debbie, Cressida, Izabela, Leo, Caroline, Maggie, Fran, Deb, Katie, SB, Claire, Amanda, Pip, Libby, Anne, & Liz - forgive me if I've forgotten anyone) - and I'd rather have a fresh conversation than rehash things I've covered here.

I have been guilty of avoiding contact with people who were unwell - my father (I couldn't bear to see him stuck in his body, I didn't want to cry in front of him, it upset him); my old landlady (I didn't drop in on her in her nursing home for 3 years because I didn't want to be told she'd died - it was a shock to get a call about her passing from her son-in-law, though it became bizarre when he didn't give me the funeral details); my cousin (she always seemed to have other people there, I didn't want to intrude too often). I kept visiting Dad and Marita, not as often as I felt I should, because I wanted to see them, to let them know I was thinking of them, that I loved them.

Even when going through an illness, people are still very much alive, and speaking to, or seeing, their family and friends is important for maintaining a sense of self, of connectedness, of love, and so many other things. We're dead a long time when it's over, and while I believe that our spirits never die, and are always connected to those we love, it's better to nurture and celebrate those bonds of love during life, while we can. So if you don't know what to say to someone who is suffering an illness, just ask them how they are, have a conversation with them, take them out and give them some pleasant experiences to remember, don't feel you have to be deep and meaningful. Sometimes just hearing a funny story can be therapeutic, sometimes just sitting together in silence is perfect. Don't be put out if the person is fatigued or irritable, or unable to concentrate for long. Your calling or visiting them will have made them feel remembered. Sometimes the isolation that illness brings can make you feel you're just waiting in limbo - I'm so thankful for the people who phone, email, visit or text me, often at times when I'm lacking in energy to initiate anything.

Early this year, I didn't call Pam, my workmate with lung cancer (who had never been a smoker), after sharing a room with her in hospital. We had several good conversations there, including about her knowing that she didn't have much time left (she'd been given 3 months), and although I thought of her often, and thought of calling her to see if she had moved into the house they built, I didn't get around to it - partly afraid to hear she'd passed, partly because I didn't want to intrude on her time with her husband and family. It was a shock to hear about her funeral when I visited work a couple of weeks ago. She is still very much alive in my mind, and I'm sorry I didn't call her. I can still hear her voice in my head, and still feel the warmth of wisdom and compassion that she shared so generously with others. We talked about the cruelty of fate when we spoke in January, and she seemed at peace with the inevitability of her demise, and was glad that she'd had time to talk to her husband, children and grandchildren. While I'm sad I didn't call her after I left hospital, I feel like we shared a lot in our conversations in January, and I told her how much I admired and cared for her, and how unfair it all was. She expressed similar feelings to me (we always were a mutual admiration society), encouraged me to focus on getting better, and I felt like we'd said our goodbyes, not that we wanted to. So I had a sense of closure with her, and I'm glad I got to see her this year.

Wednesday March 26th
I've been feeling very angry the last few days, angry about the unfairness of people getting sick, about young people getting sick, about old people getting ill, about the difficulties involved in caring for elderly people, about this disruption to my life, where I wanted to be fantastic mother to my kids and
to make a difference to people with brain disorders and their families in my career. I hope I'll be able to do these things, despite the changed trajectory of my life. I'm angry that I now have the fact of my mortality clearly marked in my brain, that I've seen the images, that I can't pretend that it won't happen to me one day. Even though I have an "incurable" illness, the termination date isn't set - I'm glad about that, but angry as well. There's still so much I want to do, and I'm angry that I now have doubts as to whether or not I'll do them. I used to think I'd get around to them some day. Now I feel like I need to hurry up and get on with it, while simultaneously taking time to recover and rehabilitate myself.

I'm also feeling angry about many of the campaigns to raise awareness of cancer, or to raise funds for cancer research. The colour pink makes me want to vomit. I have no problem with people wanting to show their support for people with cancer or other diseases, but as someone who has put up with it for 14 months now, seeing pink doesn't make me feel better. I had friends who marched around the 'Tan in Melbourne last year, and I love them dearly for all that they've done for me, but I don't need them to do this to know how much they care for me. I'd rather they go and have dinner and see a show and tell me about it.  Sure, if you want to, donate money to cancer research, especially rare cancers, but if you want to really help people with cancer or any other chronic illness or disability, go and spend some time with them, take them out, let them know you care about them. Don't leave them in their homes while you go out with your healthy friends and enjoy the solidarity of marching for them, of making a giant pink lady on the MCG.

I'm increasingly annoyed by Facebook campaigns "to raise awareness about cancer," by asking people to post cryptic message, or more recently, selfies of themselves sans makeup. It does no such thing. Posting information about cancer symptoms and detection is more helpful. Posting selfies just shows how good most people look without makeup (probably carcinogenic), and gives people an excuse to post a selfie without being vilified for doing so (thought I love the post of Robin Williams as Mrs Doubtfire, and then without makeup). I'm fortunately not acquainted with any narcissistic prolific selfie-posters on Facebook, so I'm not disturbed by the phenomenon. I have taken a number of (unpublished) selfies in the past year because there was nobody around to ask to take my photo. The selfie, for me, is to prove I still exist, and to track how I looked. I don't even look in the mirror much any more, I don't want to see the remnants of the steroid-induced hairy moon face, and there's no hair to style. I can feel that my hair is growing back on my scalp, which is good and bad.  Good, because it will be warmer in winter;  bad because I will have to work out which ultra-short hairstyles will suit me. I want it to look deliberate, not accidental.

A couple of you have asked why I wrote that I feel cowardly when blogging. I didn't explain it well at the time. The cowardice is sometimes in using the blog to update people with bad news. In the old days, we used to get on the phone to tell people these things. So in not picking up the phone and making a call I feel like I'm being a chicken -  I don't want to cry on the phone to you, or to upset you with my news, and writing is one way I can get my feelings down and make sense of the developments without taking up someone else's time, or to have to help them deal with the news. It's also not practical for me to call everyone individually, and the blog ensures that you're hearing it from me, not second or third-hand. Sometimes it feels cowardly because sharing news of setbacks in this forum feels a little like throwing firecrackers or a hand grenade into a gathering that I'm hosting. I don't know how it's going to affect people, other than it's likely to startle or upset some of them. I'm worried that people will be upset, and I wish I could throw streamers and party balloons instead. I know you're all here by choice, and that it's naive to imagine that every event is going to be one of good cheer, but as the author, I do feel responsible for the tone of this narrative, and I would like it to start heading to the blue skies and sunlight of healing and resolution (think Julie Andrews singing Sound of Music on top of that hill), instead of continuing to trudge through the plains of character and plot development (think Mordor, or Harry, Hermoine & Ron taking that damned Horcrux on a dreary tour of the UK).

I'd like to have my battle with Voldemort, and get it over with (I'm going to win, of course, I have love on my side). I'd like to stand at Helm's Deep and fight. Instead, my battle is waged inside my body, at a cellular level, where mutant cells need to be identified and destroyed by my immune system, with the help of medications and supplements and diet - but it's hard to know how well my defence is working, apart from how I'm feeling and my symptoms. The next MRI won't be until May, if we stick to the 3 monthly review schedule, and if I don't develop any more symptoms. It's a little like having termites in your house, having them treated, but not being sure if they've been eradicated, or if they'll return or not.

I was beginning to think that the anger was a sign of losing control, I've only felt it occasionally over the last year. Then I realised it was a sign of my energy returning - the energy to be able to fully vent my spleen at last, after 12 months of not having the energy to engage in that level of emotion - I chose not to engage with my anger because I needed to conserve my energy, and I felt it was futile to get angry, I couldn't see how it would help me. This week, I've found that my anger it is an energising and motivating force, and that it might result in good, if I channel it well.

I posted two selfies on Facebook earlier this week, along with this comment:

Selfie with radiotherapy mask and steroid induced moon face. no make up. Taken on a good day. Second photo taken whilst in hospital with febrile neutropenia for probably the 7th time after having two primary cancers treated with chemo and radiotherapy in less than 12 months.
Cancer sucks. It takes away your energy, disrupts your life, affects your ability to live as you normally would. Rather than trying to raise awareness of cancer through posting selfies on Facebook, I wish people would go and visit someone with cancer or a chronic illness, or volunteer to do so. People with cancer need to feel that they're still connected to others. We all do. So go visit someone you know who is unwell, have a good time, and put a selfie of that on Facebook.

I love this quote from the Dalai Lama:
"We have learned that the key to happiness is inner peace. The greatest obstacles to inner peace are disturbing emotions such as anger, attachment, fear and suspicion, while love and compassion and a sense of universal responsibility are the sources of peace and happiness."

So I might just cultivate peace and happiness by observing my anger, attachment and fear, and converting them to love and compassion.

Blogging sometimes feels like a coward's way of sharing my news.
I can write in the comfort of my room, taking breaks when I need to, formulating my thoughts, confessing to some emotions, suppressing others, and publish the post without knowing exactly how it's going to affect you, the reader. My family, friends, acquaintances.

You've chosen to be here, to read this, and I appreciate it, and admire your courage in reading what sometimes seems to be like watching a train-wreck in slow motion. The heroine of the movie keeps flying around and rescuing people, but the train keeps falling apart. Can she pull it together, put it back on the rails? Will it still be a train at all?

I don't know. I just keep going, trying to be as patient, compassionate, appreciative, non-reactive (non-irritable) and kind as I can be, trying to enjoy every day that is given to me because if they hadn't found the tumour when they did last September, I would very likely be dead. Every day since then has been a gift. I just have to  remember to look at it that way. And I do need to remember, rather than looking down at the rocky road I travel. I need to keep looking to the sun, to the light of hope, to the clear beauty of the infinite amount of love that exists in the universe, love which creates and sustains every living thing. Everything is fundamentally perfect and good, and I need to keep remembering that, seeing that, and trying to manifest it in my life, to help make life better for every living thing.

It seems vain and foolish to have such lofty goals - but if I focus only on relieving my own suffering, which is created if I immerse myself in fear of the future, or guilt about the past - then I am being selfish and missing a chance to do greater good. If I focus on generating love and healing energy for myself and all other beings, then I am sharing it with others, and not keeping it for myself. It would be selfish to ask others to pray for me, or think of me, if I didn't return the favour.

It's good and bad that my hair is growing back - good because it makes Ben and the boys, and Mum, happy, good because it's warmer, but bad because I quite enjoyed being bald, and it saves me time that could better be spent meditating.

I hope and pray that I will live a long life, so that I can be a good mother to my boys, a good wife, sister, daughter, aunt, friend, and an advocate for all those who have experienced brain disorders and serious illnesses.

I hope to spend more time writing, as my endurance increases and my need for sleep decreases.

Wishing you all peace, love, joy, and good health.

Tuesday musings

847am, back in bed, feeling achy from a very long walk on Sunday. Didn't sleep that well last night - hips aching from the GCSF, calves aching from the walk. Woke up feeling great this morning, but my energy fizzled away after we'd dropped Nathaniel off at school. The cold, dreary weather didn't motivate me to take a walk - the warmth and comfort of my bed are much more appealing - I will try to get my sleeping out of the way in the morning today, and build my energy for the afternoon.

I've been touched by the dozen emails, text messages, and phone calls I've received since my last blog post. It's heartening to know that you're thinking of me, and it makes me feel stronger and less alone.

I'm still coming to terms with the news that there are possibly three low-grade tumours in my brain. I think I'm still cycling through the stages of grief, not in any particular order - shock, anger, denial, guilt, bargaining, sadness (not depression for me), and acceptance. I sometimes work through several of these stages each day. Sometimes I find that meditating before falling asleep helps, other times I compose blog posts in my mind, other times I just turn off my mind and go to sleep - stress and sleep deprivation making seizures more likely, and me more emotional. Most times, I plant my spear in the ground and turn around to face the battle ahead. I am not going to succumb to this without a fight, and while I wish I didn't have to spend time each week reading about alternative cures for cancer, I know that it's the best thing I can do, given that there are no conventional therapies available for me - I can't have Temodal, the chemotherapy used for brain tumours, because my blood cells weren't reaching maturity, and  my bone marrow still needs the GCSF to encourage it to produce more blood cells so that I don't become pancytopenic again - I don't want more blood transfusions or IV antibiotics, or more serious complications like myelodysplasia.

My prescription medications include

thyroxine (for long-standing hypothyroidism)

aerius (antihistamine)

Keppra (anticonvulsant)

Tamoxifen (to reduced recurrence of breast cancer)

Nexium (for acid reflux)

Valgancyclovir (anti-CMV, shown to dramatically improve outcomes in people with GBM)

Melatonin (helps with sleep, also reported to have anti-GBM effects)

GCSF (to boost bone marrow)
Dissulfiram (aka Antabuse - reported to cause glioma cells to absorb copper, which kills them)

Clonazepam (as required, if I have an aura (sense that a seizure may be coming on)

Herbal/supplements (list developed after lots of reading and consulting with pharmacist  (marked *) and checking with oncologist

Folate

Vitamin E

Vitamin D*

Astragalus 8*

MagCal*

Zinc Maintain

Selenium drops*

Immune defence*

Probiotics

Acai capsules

Squaline (shark cartilage - Ben found some research suggesting it was useful)

Resvertrol (liquid made from skins of red grapes - tastes better at room temperature than out of fridge)

Curcurmin*

Avemar (fermented wheat germ, said to improve immune function and NK (natural Killer) cells, and to reduce chance of metastases - wish I'd ordered the capsules, the powder in the sachet fastest like fake grape juice0)

Percy's powder (a mixture of minerals that Percy used to cure his sheep, and himself, of cancer - fascinating story - the powder, when mixed with water, tastes like mineral water from the pumps at Hepburn Springs in Victoria. Best downed quickly and followed by something to dilute it).
And a whole lot of Tibetan medicine tablets that Ben has obtained for me through a Kiwi who trained for 10 years in Dharamsala.

I've ordered some Pecta-Sol (Modified Citrus Pectin) to add to the regime, it's reportedly quite effective in a number of cancers. 

All of my reading is making me think that dietary and metabolic factors probably contribute to the development of cancer more than genetic factors. Poor immune system health (from unbalanced, unhealthy, inflammatory diets) makes people more vulnerable to disease, and boosting the immune system seems to have some benefit in treating or even curing cancer.

I'm really pooped now, need to have that nap, before tiredness allows me to be overwhelmed by the task ahead. When I wake, I'll have energy to fight again.

PS (post sleep) - I slept most of the day. Good, deep sleep, with dreams. I feel reinvigorated, and am working to dispel the fears that increased sleep during the day is bad. The fears are like leeches, and need to be picked off, one by one. There's so much I want to do, and I am telling myself I have all the time in the world to do it. I need to care for my body, detach my mind from irrelevant, unimportant things, and focus on healing myself so that I can live a long life dedicated to helping others be free from suffering.

Om mane padme hum.

Just when you thought it was safe to go back in the water… (possible trouble ahead)

Hi. I've just had a very full and enjoyable long weekend with Ben and the boys, but one tinged with sadness at the news I will share in this blog. 

I'm so sorry that my story hasn't been a simple one of diagnosis, treatment, and recovery. It seems that every time I start to get better, something new comes along to challenge me. That's the problem with reading a blog like this - it's written in real time, and the plot direction is unknown - I'm just reporting on the latest developments, which don't always take the desired direction (i.e. a happy ending).

Don't worry, I shouldn't be carking it any time soon, but cancer is a sneaky, vile, beast, and is hard to eliminate. I'm sorry if the latest developments cause you any distress - I'm still here, still functioning, still cognitively intact, still determined to get through this.

Have any of you known anyone who has had multiple gliomas, or even low-grade glioma? I've been told that "people can live for years with low-grade gliomas," but given that I've also had two grade IV gliomas, I'm feeling rather shell-shocked.

My post-treatment brain MRIs have shown three additional areas that look like tumours (the two original surgical sites were unchanged or improved - yippee, or so we thought). The specialist radiologist who reviewed my scans says the 3 new lesions are stable, which suggests low grade tumours., My oncologist said that we should leave them alone, "unless the symptoms produced by the tumours are worse than the effects of removing them." One of the tumours is in the left fronto-parietal region, about 2cm in diameter (opposite the location of the first 4cm tumour on the left), and the others are in the left and right hippocampi - the hippocampus is a structure in the temporal lobe that is necessary for forming new memories. All operable areas, and all with potential to result in significant cognitive changes if they progress.

This is all so ironic, given that my PhD was on tests of hippocampal memory function. If they took out my right hippocampus, I might have visuospatial memory loss; if they removed my left hippocampus, I would most likely have significant verbal memory problems, and if they took out both, I could end up amnesic, like the patient HM - able to remember the past, but not to learn anything new. At least it would give experimental neuropsychologists a new case to study - not that I want to be that case.

My new mission in life is to kill the cancer - and enjoy every day as much as I can.(singing "kill the cancer" in my head to the tune of Ride of the Valkyries (look up 'kill de wabbit" on youtube). I'm reading all I can about ways to destroy the cancer cells - I've been taking Valgancyclovir since late September, avoiding sugar, trying to eat a ketogenic diet - looking at supplements (so many claims, so little evidence), exercising, socialising, meditating, praying. 

Any words of encouragement or experience with multiple (low grade) gliomas would be appreciated. As would your prayers or visualisations of my body becoming healthy and cancer-free.

I'm still in a state of shock, anger, and disbelief, and a strange sense of resignation that my life will continue to sail through uncharted waters. I still have hope and faith that I will get through all this. It's just hard to believe it's happening. 

cancer care plans - should be routine for those undergoing treatment, and for after treatment

It's been strange being a neuropsychologist undergoing treatment for cancer. As an allied health practitioner, I'm used to multidisciplinary models of coordinated care for people with chronic disease, or needing rehabilitation. With cancer, from diagnosis to the end of treatment, it felt like I was in a well-organised production line - tests, diagnosis, treatments all flowed in a logical sequence. Once the treatment was over, I felt like I'd fallen off the conveyor belt and onto the floor -  there was no sense of coordinated care - we have to book the regular reviews with the oncologists, the blood tests,  the port flushes (every 6-8 weeks). Everything was left to us to ask about - nothing was written down - it would be reassuring to have something in writing about how often I should see the various oncologists and have scans. My memory isn't too bad, but there are so many things to remember, it would be handy if something was provided to patients and their carers to make sure that nothing is missed out.

I was very happy to find this page in a google search today survivorshipcareplans
Rather than reinventing the wheel, I'm going to try out the three plans listed for myself, and recommend that they start using something similar at our local hospital. It would help provide a practical anchor for people after treatment is over, and lessen the sense of being cast adrift - this is not a reflection on the quality of care I've received, just the strangeness of moving from daily radiotherapy over several weeks to no appointments at all for weeks at a time. While I can make up my own care plan, it would be great if guidance was provided to all cancer patients, starting after diagnosis. Perhaps if patients were given information about the dangers of infection during chemotherapy, there would be fewer deaths due to febrile neutropenia - I've heard of people who didn't seek attention until it was too late.

The http://www.livestrongcareplan.org site gets you to do a questionnaire, which then gives an individualised plan, based on the type of cancer and treatments received. It allowed me to complete two plans for my two types of cancer, and both plans gave reassuring information. Well, mostly. Thinking about long-term side-effects of treatment isn't reassuring, but it's important to know they exist, and when to seek help.

PS - the second video about surviving cancer is worth watching.

philosophy and dealing with chronic illness

An interesting article to savour. http://www.abc.net.au/radionational/programs/bodysphere/confronting-terminal-illness-through-philosophy/5285938 

This bit really resonates with me:
"'Health care is based on trying to treat the biological body,' says Dr Carel. According to her, in the consultation room the physician and the patient think they're talking about the same thing. 'They're not, because the physician is talking about the disease entity and the patient is talking about the illness experience.'"

Symptoms may come and go, the experience of being ill can last a long time. Having health care workers who ask about symptoms and the illness experience would indicate that they are looking at the symptoms in the context of the whole experience, not as unrelated entities. The patient has to go home and deal with everything. Alleviating the symptoms doesn't take away the reality of dealing with a chronic health issue.

Feeling happy and well

I'm feeling fantastic at the moment, it's so good to feel energised and healthy. I tried a new juice recipe yesterday - celery, apple, carrot, parsley & spinach. I didn't have the pineapple juice mentioned in the recipe, but it would have given me too much fructose (two apples probablyalready exceeded my daily allowance), and the drink tasted fine. The recipe, instructions, and touted benefits are at this site
http://healthwyze.org/index.php/component/content/article/194-our-secret-weapon-the-green-drink.html

I'll have another for lunch, and see if the effect lasts.

I'm on so many supplements at the moment, it's hard to know which ones are responsible for feelings of wellness. Introducing one at a time allows me to see if there's any effect, but as a single case study, it's hard to know if it's a placebo effect, or an improvement that would have happened anyway.

I'm sorry if I've alarmed any of you with my last post (which mentioned a possible new lesion in the right hippocampus)- I've reassured myself that I don't have any new symptoms (e.g., headaches, seizures, blurred vision, nausea) that would suggest a new tumour. I'm less fatigued than I've been in months, and feeling stronger with every walk. My neuroradiologist friend will get back to me today after looking at my scans, so I hope the situation doesn't change. However, if there is something growing there, it needs to come out.

Hmm, I wonder if the thing in the right hippocampus might be responsible for my pre-Christmas difficulties in directing people around less familiar parts of Launceston (e.g. getting back from K-Mart?) I sometimes felt very unsure about which street to take, and was puzzled at the sense of disorientation. I assumed it was due to the parietal lesion. The only epilepsy surgery patient I can recall with specific visual memory deficits post-surgery was one with a new lesion (GBM) in her right temporal lobe. Of the patients who had longstanding right hippocampal lesions (hippocampal sclerosis, thought to be present from birth), the proportion with visual-specific memory deficits in our large St Vincent's sample was less than 5%, i.e. no greater than you'd expect in the general population. If I need surgery on my right hippocampus, the visual memory problems might get worse, but it's better than my health getting worse. Funny how people can function with bits of their brains damaged. I am so, so, lucky that I haven't been more significantly affected.

Sorry about that technical musing…a bit of a neuropsychological reverie.

Back to the real world. I had a great morning after dropping the boys off - I got the taxi driver to take me to the hospital where I caught up with several people, after savouring a wonderful breakfast (poached eggs, mushrooms, and bacon for $5). I bumped into one of the senior rehab nurses in the caf, spoke with Stella, my lovely barista with the phenomenal memory for people's names and favourite drinks. I went around to allied health (my old department), saw a couple more people, then went up to the stroke unit and had a good chat with the nurse unit manager, then went down to the oncology ward to let them see how I look when I'm healthy. I only recognised one of the nurses there, but she said she'd tell the others I dropped in and was feeling great. On the way to get some blood tests done, I bumped into two of the allied health managers, one of whom has recently moved into a new place with his husband. I'm so happy for them! Then I saw two psychology colleagues on my way to the taxi rank. I felt so full of happiness from seeing so many people that I didn't need to talk to the driver on the way home.

Ben always used to say that social interaction was like oxygen for me. I think it's even better - it's nourishing - I feel so energised from seeing and talking to these people. I am sad to hear about the recent passing of my friend who had lung cancer, and of the loss, last year, of a colleague's sister to leukaemia, but I was able to give her a hug and my condolences when I saw her this morning, not that it would help much, she was only in her 20s.

I read somewhere that cancer strikes one out of every three people at some stage in their lives. One in one million would still be too many.

Please, please, keep yourself healthy. Go for that daily walk, eat lots of fresh vegetables, not too much fruit, and investigate anti-inflammatory diets - restrict your sugar and fructose intake, avoid refined carbohydrates and starchy foods, don't eat too much protein, avoid foods with additives, soft-drinks, and too much alcohol. Eat healthy fats (coconut oil, butter, cream) and avoid polyunsaturated oils.  Look after your psychological and spiritual well-being as well. Your  general health should benefit, and you may just save yourself from getting cancer. Encourage your family and friends to adopt the same healthy habits. I pray that no-one reading this, or the people they love, will get cancer. It's a terrible thing. Not only does it sap your health and threaten your life, it consumes time and energy from days when you should be enjoying the sun, the air, and the company of others.

love and appreciation to all of you.

Cancer? What cancer?

Last week was a good week for seeing people. It started with  a lovely visit from two friends (former students and then workmates) and their babies early last week. It was  so nice to see them, and to meet the babies, one 6 months, the other only 2 months. We had a late brunch at Stillwater on Tuesday (see photo), followed by a satisfying afternoon nap. It was very good to have visitors who appreciate afternoon naps! Also wonderful to spend time talking about babies and children and motherhood, rather than cancer and treatments. A very dear friend from Melbourne dropped in for lunch on Friday with his wife and daughter after a trip around Tassie with their caravan, it was so good to see them again. They dropped my off at my rad one's rooms, and I was picked up by another friend, over from Melbourne for the day.

I miss my friends from Melbourne, where I went to study in 1986, and didn't come home until 2010. Even though everyone was spread widely over Melbourne, and we never caught up as often as I'd have liked, I did make friends with some lovely people over there. I'm missing the variety and quality of food available in Melbourne as well. Launceston has some excellent, some good, places to eat, but not many.  It's been a year since I've been back to Melbourne, time for another trip soon.

I've generally been feeling much better, not needing to sleep so long during the day. People say my eyes are sparkling, and that I'm looking well. I knew I was unwell in December-January, I didn't realise I looked unwell too!

The GCSF injections are making my hips and thigh bones ache, which disturbs my sleep at night. It makes my hip joints very uncomfortable, and lying on either side or my back is uncomfortable, despite taking panadol before bed and in the middle of the night. At least the nights are getting chilly now, good for snuggling in bed.

I woke up this morning thinking that I will adopt a new motto: "Cancer? What cancer?" I am healthy now, and intend to stay that way. Some people devote all their time to researching treatments for cancer, modifying their diets, exercising, and making other changes - all valuable pursuits, but if they take over every waking hour, that's not much of a life. I'm trying to achieve a sensible balance of healthy diet, exercise, meditation, personal development, and reading to prevent the cancer from recurring, in addition to trying to be a better wife and mother - I can't undo my past mistakes, but I can try not to repeat them.

One thing I've been grappling with is the loss of my career. I feel like I've been retrenched and forced into early retirement, without having mapped out a retirement plan. I loved being a neuropsychologist, and devoted so much time to it, it was a huge part of my identity, it still is. But I don't know if I'll ever be able to go back to practicing. I find it hard to concentrate for long periods, I get distracted easily, I sometimes forget things that people have told me, and ask the same question at least twice before I register the answer. I feel mentally slowed, muddle-headed at times, and sad stories upset me - I'd be hopeless at taking a history right now. I get so frustrated when I hear of medical mismanagement (e.g., misdiagnosis or lack of follow-up care), I don't know that I would be able to maintain the necessary objective distance when seeing patients. Of course it's only 5 months since I had the tumours removed, and 3 months since radiation was completed, so it's only early days yet. There's always room for more recovery (my scintillating scotoma is barely there), and I shouldn't be put off by the insurance claim forms where my doctor writes that I "used to be" a high-functioning neuropsychologist and have suffered a loss of function. He's telling the truth, saying exactly what I've observed in myself, it just feels more raw to hear it from someone else.

A friend offered to run me through the WAIS-IV and WMS-IV again as a post-test to compare with my 2009 assessment. I'd suggested that we do a presentation at this year's CCN conference on something to do with cancer, or on the difficulty of interpreting the neuropsych assessment of a neuropsych who knows all the test items, but the thought of being retested is rather unpleasant. I do, and don't, want to know if there's been an objective decline, and I don't think I'd want to share the results with anyone, whatever they were. Also, retesting will be contaminated by my familiarity with the tests - I might score just as well, or better, than before because I have given the tests many times since I was tested. If I score more poorly than before (scary thought), then that might suggest a significant loss of function, something I don't want to know about, and certainly wouldn't go sharing at our national conference. I'm not sure about pursuing my idea of a presentation - I'd like to share my experiences and the insights they've given me, but I'd need to feel comfortable with doing it. I might try writing something before I submit anything - I'm not sure what angle I want to take, though I would like to talk about the huge unmet need for neuropsych involvement in cancer care. Maybe it could be on what it's like to have a brain tumour? No, that brings tears to my eyes. It's something I can write about, or talk 1:1 with people, but not as a conference presentation. Not yet.

Other developments this past week:
1. my surgeon spoke with her colleagues, and they agreed not to do a stereotactic core biopsy on my remaining breast, but to wait and see. I still need to talk to her about that prophylactic mastectomy - though I want to get fitter before I have it. Maybe after Easter.

2.  my rad onc gave me copies of the MRI reports from 30/12/13 and 6/2/14 when I saw him on Friday. I read them in the car on the way home, and was shocked to see that the December scan was reported as showing an area of increased signal intensity in the right temporal lobe, involving the choroid plexus/right hippocampus, "?metastatic in nature." It was reported as not being present on previous scans. The report from February made no mention of the area of increased intensity in the right temporal lobe, even though it was still there. I looked at the February scans with my rad onc on Friday, and it is a discrete area of increased signal in the right mesial temporal lobe, not connected to the previous tumour site. My neuroradiology friend in Melbourne had thought that the hippocampal enhancement might be scarring as a result of seizure activity, but I've only had two seizures, both consistent with a right temporal lobe focus, and I can't recall ever seeing scarring to that extent in TLE patients when I worked at St Vincent's. I'm going to call my friend  tomorrow and ask if he can compare the scans for me (I hope it's not stretching the friendship). It gave my such a fright to see the report when I'd been told everything was looking better. If I've got another tumour growing my brain, it hast to come out, and quickly. I don't know if I can have radiation to a new site, but the old sites can't be irradiated again, and my bone marrow won't cope with chemo again. So I'll have to put my faith in complementary and alternative medicines, prayer, meditation, positive thinking, exercise, and whatever else we can find to combat it, if it's something to worry about, and to stay recurrence-free, if it's not.

Reading those reports was the first time that I've been confronted with the very real possibility that I might, one day, have a recurrence of my gliomas. It made me feel scared, and very angry at the thought that my kids might have to face growing up without me. They are my reason for going on, for fighting, even when I've felt utterly exhausted and drained of all motivation - David and Nathaniel are my reason for living (sadly, that doesn't translate into perfectly behaved children - a fantasy).

We have a referral to see a neuro-oncologist in Melbourne for advice on treatment options if there is a recurrence, given that I can't have the Temodal again. I hope we'll be able to see him in the next few weeks, which will give us our trip to Melbourne and a chance to catch up with friends, family, and food.

Time for sleep now, and to focus on myself as whole and healthy, and cancer-free. I had cancer in 2013. I don't have it any more. The future looks exciting and full of possibilities.