Palliative care and questions around dying.

I began writing this post in May. I have been trying, for months it seems, to compose a piece that I would be proud of. An honest piece, grammatically correct, maybe containing the odd joke or two. I love words, I love reading; but the more I read, whether it be an article, an essay, a book, the more I realise that I am a reader not a writer. Take the length of that previous sentence as evidence. However today, for some reason, I do not seem to care as much. I have reached a point where mediocre is acceptable. Not a great catchphrase for the kids, but I have found that if I don’t have mediocre, I don’t have anything. So today, I am going to type, and not edit until the end. I am going to admit that a vivid dream is still not reality.

The first anniversary of my terminal status has passed. There were no celebrations. For over a year I’ve been under palliative care. This is not as frightening as it sounds. My hospice nurse calls me once a fortnight. If I have a fresh complaint, she may visit me at home. The Wellington haematology team manage my disease, the Nelson Tasman Hospice team manage my symptoms. In May, a routine hospice call revealed an ulcerous insomniac tearing at her skin, rather than the charming patient they were accustomed to. My symptoms had overcome me. Although death remained distant, I was admitted into the hospice unit for symptom management.  

For the last year, I have tiptoed past the hospice inpatient rooms en route to my counselling sessions. I never once asked what the rooms were for. I had always assumed the worst. It turns out that the majority of hospice rooms are for symptom management. They are not the introductory tombs that I had envisioned. I was admitted into one of those daunting white rooms, for monitoring and medication management. My body was infuriating me; I did not even protest my admission. If I was permitted to lie in bed all day, pretending to read, then I was quite happy. Sometimes it is nice not to have any pressures. The room was comfortable, although on the wall at the foot of the bed, a giant clock hung. It seemed to mock me with each second. Tick; “That’s right, while you’re lying in bed, time continues, and you have little time left.” Tock. Unfortunately, I am no Lola. I was forced to accept the taunts of time.

The symptom management wasn’t a great success. I continue to itch, scratch, and bleed, although the itch seems less intense, and the scratch more habitual. I try desperately to break the itch-scratch cycle, but just don’t know how. Hospice introduced me to Pinetarsol and menthol moisturising cream, which I coat myself in each morning. I imagine I smell like a Xmas tree with a cold. The Pinetarsol seems to be beneficial; an itch reduction rather than a cure, but at this stage a reduction is all that I am after. And if anyone dares to ask if I have tried antihistamines, I will wallop them with all my wheezy strength. I have had a chronic itch for 8 months, of course I have tried antihistamines. Don’t worry, I don’t actually wallop them. I give them a biology lecture. You would be surprised at the number of people who seem to know what is best for my health.

Hospice don’t merely manage symptoms. They manage dying. And to provide personalised care, they need to know one’s thoughts on death. A year ago I was handed a few pages to fill out. Questions to get me thinking about what I would want if I were unable to communicate. I thought they would be simple enough, you know, questions about organ donation (donate everything), religious rites (don’t bother), and my preference of burial or cremation (cremation, ashes scattered.) See, I had the answers already. This questionnaire wouldn’t take ten minutes. One year on and I am yet to complete my advanced care plan.

The questions are really difficult. Not only are you forced to imagine an absent future, a future where you are, if lucky, a mere memory; you are forced to imagine a future where you exist as an unconscious mass. Both scenarios induce painful tears, so I tend to avoid these thought experiments. But the questions keep coming.  Where would you like to die? Who would you like at your death? Would you prefer to die alone? Would you prefer to be comfortable or lucid? Is length of life or quality of life more important to you? It seems that my answers to these questions are further questions. I mean, when are you officially dead? Is it when your brain stops, or when your heart stops? How long are we talking in terms of length of life? Is it months, or is it days? I have been told that coma patients are able to hear. Would I be content with listening?   

And then there is mood. Some days, I’d like to invite the Nelson populace for a bedside visit. Other days, I decree I must be left alone. There are scribbles and arrows and more scribbles as my relationships and philosophies change. These changes seem to happen weekly. I guess I am no good at planning. And besides, it is more important to those around me. It is more important that their wishes are met. Because I will be dead, and nothing will matter anymore to me. But I must add that I do not want a spectacle; no state funeral, or parade, or public holiday; deep down I am a humble being.

Advanced care planning is encouraged for healthy individuals too. In case of future illness, or perhaps an accident. The questions on organ donation, I feel, are vital to discuss. New Zealand does not have an organ donor register. The government were petitioned last year to install one, but they declined to do so. They recommended a culture change, more discussion on the issue, rather than funding. Medical teams continue to rely on a driver license to gauge one’s opinions on organ donation. The donor status is not legally binding, although it may soon become so. The family can still say no if they are uncertain of your wishes. In France, they have an opt out donor register, rather than an opt in. It saves lives.

I think the advance care plan guys are right. I think discussion about death is important. I find I don’t really discuss death, even though it is always at the edge of my mind; a dark haze drifting in from the outer regions, grounding all flights. It is difficult to know who is comfortable talking about it. Death tends to be a conversation killer. Perhaps not everyone needs to picture the exact moment of their demise, but a little discussion on wishes, of your body, of your funeral, can really be helpful. So I ought to complete those forms.

By Liv Stocker

Kintsugi: Life and Healing after Cancer

I had just turned 37 and my baby had not long stopped breastfeeding when a doctor found cancer deep in my breast.

A few weeks later, a team of doctors and nurses worked for 11 hours to first take away my cancer and then to fix what was left behind.  

But in the weeks and months that followed my diagnosis, I found myself in a body I didn’t really know or recognise, and that I didn’t trust. I had to get to know myself all over again. 

In the process of coming to terms with the new me, I have discovered that others do not share this acceptance. On a number of occasions, I have found my scars make people uncomfortable. Their eyes widen, I see pity and fear in their eyes and discomfort in their silence as they turn away. 

They see my scars, but they do not see my story.  

So in the years that followed my surgery, I began to research tattoos, artists, designs. I was searching for inspiration, and someone that could create what I feel on my inside, and put it on my outside. 

I became intrigued by the Japanese art of kintsugi (golden repair) for broken pottery. Kintsugi treats the breakage and repair as part of the history of the object, and something that adds value. When I found a tattoo artist whose style fitted what I wanted, I asked her to create a tattoo that included my scar as part of the design, rather than something to disguise. 

When I saw the finished design on the day of my tattoo, it just felt right. 

My scars, and now my tattoo, bear witness to a decision I made to help safeguard my future, to hopefully see my children grow up, and to grow old with my husband. 

They are a testament to the medical professionals who worked to save my life, and who put me back together once they had done so. 

They are a tribute those who supported me when I stumbled, and then helped me stand tall. 

They remind me I am strong. That out of these scars come strength, grace, healing, new beginnings and growth.  

They are a tribute to the women in my family who went before me and met cancer. They did not have this knowledge and they paid for this with their lives. Their gift to me was my life, and I hope I can give this gift to those who follow after me.

So now, if you see my scars, you can see my story too. 

Cancer, you do not define me. I am who I am. My scars are part of my life now, they are me, and I am not ashamed of them.

Tomorrow is not promised, but today is here now.  Live, laugh, and love. Fear less. 

By Estelle Morton

*Tattoo by Angie Dawn at Gallery Custom Tattoo in Wellington.

A Road Less Travelled

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This was not the life I had imagined I would be leading.

When I imagined myself as an ‘adult’, it was an image with a husband, a home and probably some children. I’d have had a well-paid and rewarding career, although the details of said career had yet to be ironed out. I knew I could just have my fun in my mid to late 20’s. Everyone else I knew was.

I only had 6 months of this adulthood.

After two years in Brisbane I had gotten fed up with the mindless office jobs and started to think of my future. After researching study options, I found a counselling degree that I could do in Wellington.

Graduation.

Graduation.

This is it. I knew I had found my calling.

Fast forward three years, I found myself employed in my dream job that I’d moved to Masterton for. I’d just graduated with a degree, I was so proud of my achievement. I was an adult. I had just turned 30.

Dirty thirties! They’d all tell me. Better than your twenties. What happened next hit me like a tonne of bricks. It all came spectacularly crashing down around me.

“Hi, have a seat. It’s not good news. Its Leukaemia”. (On call Doctor)

Four years later, I still remember the events of that day, diagnosis day or D Day as we like to call it. Like a movie stuck on repeat, I vividly relive sections of that day continually.

The day everything changed, the day the earth shook violently beneath my feet and knocked me flying. I was left frantically scrambling to regain my balance.

What the f*** is happening?

“Mum, am I gonna die?”

Those first 5 weeks in hospital after D Day I didn’t think I’d ever stop crying. Terror would pool in my eyes and cascade down my face all day every day. The nurses began to know me as the “anxious one”.

What led me to the Dr’s office that day? Most people are curious how I knew. The first symptom was my gums. They began bleeding, and the blood had a putrid smell. My gums stung and hurt and throbbed all at once. They were swollen, and in some areas the swelling covered most of my teeth. Chewing became too painful. Then came the sweating. I had swollen glands in my throat accompanied with a pain I hadn’t experienced before. I began taking two hour naps once I was home from work, and woke with raging fevers. The fatigue was indescribable. I had two trips to the dentist, and two visits to the GP over the month leading up to D Day and countless sick days. Had my new GP not agreed to do bloodwork, begrudgingly, I could have had a very different outcome. He even rang me the following week to apologise for his misdiagnosis. He had been steadfast in his semi-retired belief I was suffering from stress, not acute myeloid leukaemia.

What followed was a whirlwind of agonising multi-chemotherapy high dose rounds of ‘treatment’ and more time in hospital than I cared to count.

I was powerless over every aspect of my life. Everything was in complete disarray. Most people have an abstract knowledge of their mortality, idly expecting to reach an old age.  Sure, no-one lives forever, but it’s not something people are usually consciously aware of until they are much older. That bubble burst on D Day, and facing death, avoiding death, and trying not to die came to the fore. I was no longer bullet proof, no longer able to go about my days with the comfort of expecting to live a long and healthy life. Death was everywhere and it coloured my soul black for quite some time.

Another thing people want to know is, “so the cancer’s gone? Great what are you doing with your life NOW?”. You know, because, everything happens for a reason. Right?

It took me 6 months to claw my way back to some semblance of a life, although I no longer felt that I belonged with all the happy humans. It was like I was stuck in some parallel universe looking in on people’s lives pressing on with a frustrating normality to them, while I felt left behind. While my days were spent in hospital rooms, it seemed everyone else was preoccupied with work, their relationships, celebrations, and, everything I was no longer a part of.

I spent the 18 months between treatment finishing and my second diagnosis waiting for the axe to fall. And fell it did: I relapsed. Did I will it back? I know I have thought that numerous times, because I didn’t have the right ‘think positive’ attitude that myself and everyone else thought I should have had. Bitterness, depression, and anxiety about my cancer returning clouded my entire being.

In a weird way, there was a part of me that felt relief at the cancer returning. Like the other shoe had dropped. I could stop dreading it. The fear of something occurring is often worse than the actuality of that something occurring. I felt it in me weeks before it was re-diagnosed, snaking its way back into my bone marrow. I felt it in my spiked anxiety as I turned to wine in the evenings, and lorazepam during the days. I could see it in what I called my sweat attacks, feel it leaden every step.

Here we go again.

I’d always said I could never go through with a bone marrow transplant if it came back. Well as it turns out, I did. Only just. My brother’s words ring in my ear that day we were all crowded in my haematologists office discussing the next steps. “Well do you want to die?”.

Not really, no. I’m only 32. I just don’t think I can do this. Again.

Somehow, with a few hiccups along the way, I made it out the other side. The best part of 2015 spent in that damn place again. I emerged with a lot more scars, mentally and physically. But surviving had nothing to do with a positive attitude, or being brave and strong. It is a lottery.

So, back to what am I doing now? That is a very complicated question.

Some days I wonder how I did it, other days it’s a struggle to get up in the mornings. Most days I wonder what the point of it all is.

I don’t have time for it to swallow me. It wants to, and Jesus does it try. It would be so easy to let it engulf me, wrapping me in chains to the couch with my eyes firmly glued to the TV, empty junk food wrappers littering the floor around me. I just need to press on as it’s a hard road back from there too.

But I miss the old me, my old life. I miss what I felt like, and the direction I had been going in. I look through old pictures and see someone unrecognisable. Sometimes I feel like I’m still on pause, while everyone’s kids get older and jobs progress and more destinations are ticked off the travel list. My lists consist of hospital appointments and blood tests, and my transplant birthday. However, with each day approaching 29 July, my stem cell birthday, the chance of relapse lessens.

I know what people are wanting me to say when I’m asked, “So what now?”. They don’t want to hear about my side effects, post-traumatic stress, fear of recurrence and grief. They want to hear that I’m back working, and it’s been put firmly behind me.

Onwards and upwards/can’t dwell on the negative/there are far worse off people than you/chin up

I’m not back working full time, but I am working. Not in my “dream” job though, as after the second leukaemia the company had little choice but to medically retire me.

This is not where I thought I’d be at 34, with the constant hospital appointments for weird and wonderful graft versus host disease complications. My Mum thinks I’m morbid when I say I don’t need a retirement fund; but the statistics on 5-year survival rates for bone marrow transplant recipients is low at 26%.

This is the life I could never have imagined I’d be living.

Scanxiety and a Google diagnosis

So the last few weeks I've been struggling with a huge amount of anxiety. A while ago I found a lump on my mastectomy side of my breast and while my oncologist said it was fine, I was still worried. 

Then, for the last few weeks Ive been getting intense pain shooting down my spine every time I look down or move my neck. I've also been getting heavy nose bleeds several times a day, and wake up every night too hot, then too cold, then too hot. 

So when I saw my oncologist again, I asked how does she know that the treatment is even working? Her answer "Well, you don't." So I asked in that case why haven't I been given regular check ups and/or scans? She said "Well, we can scan you if you like." I say "uhh yes, yes I would thanks!"  "I will book you in right now for a CT," she says casually. I feel so confused. Maybe this is just a big deal to me and not her? Maybe I'm worrying about nothing? You know what, no. This is my life we are talking about here!

The next morning after another horrible nights' sleep of 'boiling hot please get me out of this oven/so cold I cant even feel my eyeballs', I roll up my sleeves and turn to the world's most reliable source - Google. With a smile wiped off my face permanently and heavy stones in my stomach, I officially diagnosed my 23 year old self after googling the following: >too hot and too cold at night during chemo>menopause>menopause symptoms>hot flushes>am I infertile>will I ever get my period again>how to cope with menopause in your 40s (there were no articles for 'how to cope with menopause in your 20s', so that had to do. I couldn't believe it, I knew there was a chance that chemo could make me infertile, but now it was set in stone. I will never forget how truely depressed I felt that day.

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So I have the scan on a Tuesday, wait 3 days which feels like 3 months to be told that the results were all clear, my bleeding nose was a normal side effect, my periods should definitely come back due to my age, the menopausal symptoms were temporary, and the feeling down my spine was just me sleeping funny. So yeah, it was a relief to say the least. 

But Ive learnt two things from this week: one is that its OKAY to feel anxious about unusual things going on in your body, but to VOICE your concerns rather than hide them, otherwise the anxiety will control you more than you control it. The other thing I learned is that no question is a stupid question, and I felt like an idiot asking about something that was probably nothing, but its important to tell yourself to be assertive and remind yourself that this is YOUR health and body - Im still learning that the health system is different here than in the US where I was first diagnosed where you actually have to ask if you want things done. 

Moral of the story: go with your gut feeling, be assertive, and don't try and diagnose yourself on google!

That's all. 

No-one Ever Talks About It

Today, in a conversation with friends, I referred to myself as a "worthless piece of shit." 

Now intellectually I know that's not a true representation of the value my life is bringing to the world and my friends quickly jumped in to lecture me on why that description was inaccurate but it highlighted for me a deep rooted underlying belief that being sick over such a long period of time has made me feel 'less than' my peers.

I have managed to work full-time for a total of 6 months since my cancer diagnosis 8 years ago.  SIX MONTHS!  Yes, I have juggled a few part-time positions over the years, but still struggled.  I never got back to normal after treatment finished and as time went on, more and more cracks appeared.  "You have chemo-induced chronic fatigue" turned into "You have developed an auto-immune condition and you will be sick for the rest of your life."  

This whole cancer/chronic illness rollercoaster has been steeped full of feelings of guilt.  No-one ever talks about it.  But I feel terrible that I got sick.  I'm not oblivious to all that my family had to give up to help me during that time and beyond.  And I'm not just talking about my husband and kids, but also my Mum, my Dad, my sister and brother, my in-laws, my friends.  This illness has taken their time, and their money.  People had to be with me to help with kids, they had to drop everything so they could cook meals, drive me to appointments, pay for extras we couldn't afford, travel across the world to be there for me.  

I had to watch all of it.  

And it broke my heart.

Sometimes I think I've put the burden down, but then, like today, it rears it's ugly head again and I realise I still carry bucketloads of guilt with me.  And I suspect I always will.  The cancer is gone, but I am not 'better' and I am never going to be 'normal'.  Like a lot of people post treatment, I'm still coming to grips with my life after cancer and the long-term effects of treatment.  

Some of those effects haven't happened to my physical body, some of the effects are still rippling through my relationships, my experiences and my bank account.

I feel like this is where I am meant to say something to make it all ok, something inspirational and full of sparkly positive vibes.  But I don't want to.  I just want to acknowledge that these feelings are there.

Just incase someone else out there is feeling them too.

'Survivor'

There is a whole lingo surrounding the world of cancer.  Words and phrases that go hand in hand with being diagnosed with cancer;  you become a 'fighter' fighting a 'battle' as you navigate your cancer 'journey'. And then you get a label as a cancer patient, a cancer sufferer or a cancer survivor.

And really, all I ever wanted to be was me.

I have always really struggled to relate to all the cancer metaphors and those who know me best, understand that unless I left the country on a well deserved holiday, I do not want to talk about my 'journey'.  But when I started the Whole Lotta Life Foundation, I found I needed to attach labels to certain stages of treatment and survivorship. 

One of the words I felt most strongly about was how we would define the word 'Survivor'.

Just over a week ago I attended 'CancerCon' in Denver, Colorado; a conference put on by American non-profit Stupid Cancer.  They hosted 650 young adults diagnosed with cancer, along with caregivers, medical professionals and advocates.

In one of the breakout sessions I attended there was a panel of people at the front answering questions. And amongst those in the panel, there sat three young adults who had all had cancer and who had recently finished their treatment (within the last 2-3 years).  The last question they were all asked was, "What do you think of the word Survivor, and do you call yourself a Survivor?"

There was an uncomfortable rustling in their chairs.  

And then one by one, they each described how the word made them uncomfortable and how they did not use the word 'survivor' to describe themselves.  They also described being unable to figure out when would be the appropriate time to start using the term.

When the session was over I looked up to see one of the three was sitting on his own not engaged in conversation like the others so I made a move to go up and introduce myself and thank him for his honest input into today's session.  

We chatted for a bit and then I decided to share the definition we have come up with at the Whole Lotta Life Foundation for the term of 'Survivor'.

At the Whole Lotta Life Foundation we define our 'Cancer Survivor' as anyone that has been diagnosed and finds themselves living with cancer.  That's it.  Pretty simple, it's all of us really.  Some of us will never go into remission, or get the all allusive 'cure', but that doesn't stop us from living, or in fact surviving, cancer.  

He smiled up at me, "I've never looked at it that way before."  I watched as his shoulders released a little.  "I like that," he said.  

We had to put box around it for the purposes of the charity. But you get to choose to define it your own way.

Truth is, each of us is a completely unique being, and each of us are going to have a completely unique cancer experience.  And the way that you 'do' your cancer or define your 'survivorship' is up to you.  Whatever you choose is neither wrong or right, it just is.  You CAN'T do this wrong. So own the parts that fit for you from the people that have gone before and discard the pieces that don't work.  

And should you care to take a 'journey' with me, lets travel somewhere tropical and warm...not to the chemo lounge.

 

When Cancer Bonds Us

No one quite understands the trauma of being diagnosed with cancer, suffering through treatment, and then attempting to pick up the pieces of your life once its ‘over’. Unless you’ve been through it too. Never mind doing all of that twice.

Throughout the years of being in this alternate universe I have been lucky enough to have met and made some lifelong friends, bonded by some seriously awful shit. Leanne Thompson was one of those people; my friend, confidante and fellow cancer buddy.

This is the small world we live in: Leanne first got in touch through my leukaemia facebook page that her husband Gavin had come across. His cousin happened to be my friend Heidi’s childhood friend. I was on my second diagnosis, mid 2015, having had two rounds of chemo that year already (one of which landed me in ICU) and had just gone into isolation the week before for the bone marrow transplant. I don’t have the words to convey the extreme loneliness of being in there, even with all the visitors and the constant stream of various medical professionals bugging you 24 hours a day. There was pity, worry, sadness, discomfort and likely a multitude of other things usually present. But when Leanne messaged me, it seemed to come from a place of simply knowing. She was well versed in the lingo, having had a transplant roughly 8 months previous, and offered something different. Not to say I didn’t love the visitors of course! But relationships already strained from the first diagnosis were further frayed by the stress of the second.

Hannah, Adele, and Leanne on Retreat

Hannah, Adele, and Leanne on Retreat

Six months later I found out not only had I won a scholarship to attend a yoga retreat in Raglan in January 2016, but Leanne had also won! Thankfully Adele, who runs the retreats, couldn’t decide between us. What an emotional rollercoaster that was! We both left with renewed vigour, eager to embrace and be present for our lives. Try happiness on for size. Leave cancer in the past.

Leanne, a school teacher, was looking forward to starting back at work full time shortly after the retreat. It wasn’t to last. Less than a month after the retreat Leanne relapsed for the 3rd time, shortly after celebrating her first ‘birthday’ (bone marrow transplant recipients often call the day they receive the donor marrow as their rebirth due to a completely new immune system).

Feels like I am having an outer body experience as I type this, still doesn’t feel real somehow. Leanne passed away just over a week after her second transplant in January this year.

I miss her. I miss our rants about whatever weird and wonderful procedure we’re going through at the time, bitching about our rubbish health, and our black humour about ‘positive’ people. Like that’s the answer to everything…..ooops tangent! Just to clarify it was never talked about meanly, probably more like a wish we hadn’t had our lives shattered multiple times. Tends to be those who haven’t had some life-threatening illness that tells you to ‘keep positive’. Just saying.

It rocks you to your core when someone on a similar path passes away. Not only does grief knock you sideways, the reminder of your own near death experiences come screaming to the surface. Add in survivors guilt, and it’s a seriously confusing disorienting pile of shite. I turn two in July. Fingers crossed.

Leanne wrote a few blogs with me and on her own that Whole Lotta Life published. I never got to tell her about my new job. There’s lots I’m selfishly missing. I remember her saying before the retreat we went on, “imagine a room full of us! For now 2 is awesome!”.

Hannah and Leanne in Wellington hospital

Hannah and Leanne in Wellington hospital

Chemo brain; yep, it’s a thing.

Chemo brain is defined as: a condition characterized by loss of memory, an inability to multi-task, and difficulty concentrating.

We can only write about our own experiences of ‘chemo brain’, and hope that it eases the minds of many who may think they are going crazy! Leanne and Hannah attempt to explain.

Leanne:

It is difficult explaining chemo-brain to others who haven’t experienced it. People try to compare it with ,’ getting older’, ‘it happens to everyone’, ‘I’m not sick, and I forget stuff’.

True… those could be valid reasons, but for those who have been through it and can relate to the frustration of forgetting the right words to say, remembering tasks, feeling like your brain has been ‘numbed’, it is much more than a ‘tired brain’.

The loss of memory is probably the most frustrating for me. I've been submitted to countless different types of chemo for multiple cancers, radiation, an allogeneic bone transplant and new immunotherapy drugs, I feel that the change to my brain is a definite thing.

It’s not like I forget everything - I remember appointments, what I’m doing during the week, people I’m meeting etc, it’s the little things that annoy me.

If I get asked to do something - for example, at work as a teacher, in a passing conversation, and then I get interrupted on the way to the classroom, I can safely say that I’ve probably forgotten what I was meant to do. I know this happens to ‘normal’ people too, but I feel that it is way more common in those who have had treatment.

Hannah:

I'm so bored with saying, “I can't remember”. To everything, all the time. A programme, a conversation, an event, a person, another conversation, words, the list goes on. I'm also bored of hearing, “are you sure you don't remember ?”, and “but it was only yesterday/last week/this morning”. Yeah. I'm not making it up, I’d love to remember. Trust me. I try really hard to reach the place in my head, to claw through the thick fog by scrunching up my face. Sometimes I pluck something out, and sometimes something so weird comes out. Sometimes I grasp at nothingness. It's frustrating because I can often see it beyond the fog but only small parts and in mixed up order.

Talking is difficult. Painful. Embarrassing. I often can't finish a sentence, or mix up the order of words, can't think of names of things ( and I'll say what's it called when …., What's that thing that…) and I have a pretty good vocabulary so it's not forgetting words that's the issue. It's getting them out of my head and into speech that is difficult. The path is broken; words disappear down potholes on their way out.

Leanne:

The most helpful thing I have found is writing notes. Post-its are the best! In working life, they are my saviours! I’m not saying that I walk around with them in my pocket or my fridge at home is covered in them - I just find that if I have them around, they are a reminder in themselves of ‘Do I need to remember something?’ It definitely helps with multi-tasking, planning and organising.

Prioritising ‘things to do’ in a list (but not too big!) helps focus on the things that need to get done.

Again, these are great tools for everyone, but when your brain is unfocused and gets tired, that little bit of extra help is all you need to feel slightly more sane!

Hannah:

My calendar on my phone is such a great tool. It saves me lugging around a diary and I chuck in appointments and reminders on the spot. Not really sure what to do about memories and other vital information beyond the foggy wall!

Beware of the limbo stick

Beware of the limbo stick

When Hannah asked me if I would write a blog post for WLL, I was a wee bit excited… which quickly turned into WTF am I going to write about? Do I go back to the start in 2007 when I was first diagnosed with ALL (Acute Lymphoblastic Leukaemia), or 2012 when I had breast cancer? Or maybe 2014 when I was re-diagnosed with ALL and had a bone marrow transplant? Perhaps I could voice my frustration and anger about how out-of- the-blue, a year after transplant I relapsed again?