Blog

Time to read…

When you are unwell, you think you will have loads of time to read.  I haven’t found this to be true at all.  In-between my cancer treatments and associated appointments and work commitments (which have been self-managed and not very onerous), I have usually only had time to be…. sick.  It’s quite time-consuming to be honest — bad quality sleeps, nauseous mornings, negotiating all the various side-effects and medications to counteract them — it all takes time.

I also like to catch up with my children and their activities.  After all, they need to continue with their lives in as normal a fashion as possible.

When I do have strength and inclination to read, I am then faced with the choice of “what shall I read”?

I have a few books and lots of pamphlets about the disease I am fighting — but sometimes it’s “yeah, nah” response.  There’s only so much material about cancer than I can face in one day or week.

However, over the past 3 months since I have been undergoing chemotherapy treatment and been transformed into a turtle-type of existence, hiding away in my home during my weeks of feeling unwell or having to stay away from people to avoid infection, I have managed to work my way through some really good books.

Some of these I am still only part-way through and for very good reason.  Some are quite heavy going and should only be read a little at a time, in my opinion.

My favourite is “Life, Happiness…& Cancer – Survive with Action and Attitude” by Phil Kerslake.  He is a seven-time cancer survivor who shows you how to use action and attitude to support recover.  (That information is taken straight off the back cover).

 I find his writing style and information to be very clear, no nonsense and practical.  He gives great advice and backs it up with examples and references.  I have taken his advice on many issues which is helping me greatly in terms of dealing with this disease and having more control over my own attitude towards it.  Thank you so much Phil!

http://www.lifepaths.co.nz

I am also working my way through “Beating Our Breasts” compiled and edited by Margaret Clark, “Surviving Breast Cancer” by Carolyn Weston and “Chemo and Back Again” by Andrea Fairbairn.

All these books are written by New Zealanders who have experienced cancer and are now sharing their stories and in some cases, the stories of others, with the aim of helping others.  Reading them sometimes is quite cathartic and I have drawn a lot of inspiration and hope from their stories.  These books are available from the New Zealand Breast Cancer Foundation.

http://www.breastcancerfoundation.org.nz

When I didn’t want to even think about cancer (which is harder than you might think), I had a choice of a few others.

One, which was given to me by my pastor, is a collection of books called “Extraordinary Lives”.

One of these is the story of Harry Belafonte’s life in “My Song”.  I learnt so much about this incredible man and his role in the Civil Rights Movement in the United States and other places around the world.  There is a lot more to the “Banana Boat” guy and again, it was very inspirational and educational.

Then, just to throw a spanner in the works (and this one I picked up from the waiting room of the cancer treatment unit… I have yet to return it, naughty me) is a really gem in the form of “Shroud for the Archbishop” by Peter Tremayne.  Oh my gosh, where has this author been all my life?  I was so immersed in the adventure and description of the story that it was finished all too soon!

An historical, fictional drama, it is set in AD664 and tells the story of a religieuse sister trained in criminal investigation.  I learnt a lot about the religious orders of that time and about ancient Irish culture which I found totally fascinating.

Now I am seeking his books out in the library because I loved his story so much.  Who needs “Miami CSI”?

And just for something different, well not so different for me but mainly because I had heard so much about this play but had never read or seen it (a terrible gap in my education) and because it was sitting in my son’s basket of books to read, I grabbed “Fresh off the Boat” by Oscar Kightley and Simon Small.

This play tells the story of a man who travels from one of the Pacific Islands to live in New Zealand and his struggles with cultural differences and the differences between a traditional island life and an urban life.

It was a story with which I am familiar, being a first generation New Zealander, borne of mixed Pacific and New Zealand Pakeha (European or Caucasian) heritage.  It is a very well written play and would have been a ground-breaker when first performed 20-odd years ago.  I would love to see the play performed with a new contemporary twist, if it shows in a town near me.

https://teara.govt.nz/en/photograph/43963/fresh-off-the-boat-1995

I have now finished my chemotherapy treatment and am in recovery mode.  I will work my way through some of the books I have mentioned but when I don’t feel in the mood, I will do some colouring-in, or art therapy as it’s called now, for adults.  A very good friend sent me a book and a set of gel pens and although it’s not something that I thought I would do, I have found it quite soothing and enjoyable.

You don’t have to think much — the hardest part is choosing the colours you want to use — just colour in, keep within the lines and let time go by, which at the moment, is just what my body needs.

 

Are we there yet?

It’s not uncommon for people to ask “where has this year gone?”  Here I am writing half-way through the year and asking myself that question.  For me, it’s really been a year of coping with breast cancer — the diagnosis, the treatment, the side-effects, the questions, the stress.

After being diagnosed in February this year, I found myself looking down a barrel thinking “how much life do I have?”

It’s very scary.

Now, having gone through 4 out of 6 chemotherapy treatments, I don’t feel quite the same but I still think to myself “where has this year gone?”  All I seem to have done is lived with cancer.

While I have tried to busy myself with my paid part-time work, doing things around the house, reading books and articles and learning new things, all these activities are conditional on actually being able to physically do them or think properly.  When you have what they term “chemo brain” your mind isn’t capable of being relied on and sadly, you might have to drop something after you have barely started.  It’s extremely frustrating.   And when I say “drop something”, sometimes that means — “go to sleep” or “just stop and rest”.

A friend wisely advised me early on in this journey — “sleep is your friend”, and that really is the truth.  I admit that I love having a “nana nap” in the afternoons, particularly on our winter days, curled up with my new favourite blanket with one of our juvenile cats.  It’s the epitome of security and cosiness.

And it isn’t quite over yet because I will be undergoing 3 weeks of radiation treatment four weeks after my last chemo treatment.  It seems to all drag on and on and on.  And yet, I feel grateful that there will be temporary end to all of this.  I feel thankful because I know that in relation to many others, my suffering is miniscule.

In talking to others, I have learnt of many others in our small community who have been touched by cancer in some way or another.  It seems endless.

I spent some time talking to a friend who has recently undergone surgery and chemotherapy.  She likened our feeling that EVERYONE has cancer to buying a replacement car.  When you decide that you want to buy a Subaru, you suddenly notice every Subaru on the road.

It’s the same with cancer.  People tell you of the way cancer has affected them (their family, friend, neighbour, themselves).

Let me demonstrate:

A teacher at our small school has a son with terminal cancer in his late 30s, a neighbour has recently found out she has ovarian cancer, a friend had surgery and had chemotherapy for ovarian cancer, another friend from my old Bible Class days has bowel cancer, my cousin’s partner died of it a few months ago (tumours on the brain), so did my best friend’s mother.  It’s tiring… it’s tragic… it’s insidious.

And yet, we need to have hope.  You can’t live in a state of hopelessness, or depression, or sadness, otherwise you wouldn’t cope at all.

For me, I have learnt to REST in God, allowing him to take away my burdens and my worries, while I just concentrate on the things I can do — like sleep, talk with my family, catch up with work on my good days.

It is extremely difficult for me to REST in God because I am so used to being in control. But this is one situation where I feel that I must, in order to recover.  If I were to worry about every single treatment, the pain I feel, the annoying things that happen (like cramp in my feet and toes every night for the past 2 weeks), then I would drive myself insane.

I am learning too though that this doesn’t need to be a temporary state of mind and being.  Maybe even post “this ordeal”, I will be able to REST in him more often and thus attain a more peaceful state of being.

Sounds almost meditative I think.

Well… dreams are free.

Language barriers

Sometimes I feel really useless because I never picked up my mother’s native Cook Islands tongue.  I keep saying that I will try to learn but the truth is, I haven’t ever really applied myself to the task.

However, I might be getting closer to the beginnings as I have ordered some resources which arrived in the mail recently.

I have opened the box and there’s lots of stuff to look at, so I will do that soon.

It’s funny though when I think of my small inadequacies… I read a post recently which puts my efforts into the classification of “pitiful”.

If you get a chance, check out this link.  Amazing article and gives some insight into the problems around language retention and hence, culture.

HOW MANY LANGUAGES ARE THERE IN THE PACIFIC?

Blessings abound

A close friend advised me to keep thinking about the things that make me happy in order to keep a positive attitude about my illness.

So… thank you Lord for my beautiful family who are hurting but show their love for me just the same and are being so brave.

Thank you for my work colleagues who are filling in, picking up the slack, stepping up to the plate and urging me to rest.

Thank you to my church family who laid hands on me at church and told me that God has my back and my family in his hands.

Thank you to all of you who have sent me messages of strength, hope, love, kick-ass attitude.  Thank you all so much.

There, I feel better already.  It works…

Telling the World – It’s back!

Telling people you have cancer again is so weird.  I mean, telling them you have gray hairs, yeah, okay.  That you have a cold again.  Totally acceptable.  But cancer… again… are you kidding me?

And the thoughts, comments come, not just from me but all over…

“But you were doing so well”

“I thought they got it the first time?”

“How does that happen?”

Yep, it’s all a bit much.  And for me, telling everyone via Facebook seemed an easy way to at least “make the announcement”.

This is how it went.. “this time round, it will be different.  Highly likely options are radiotherapy and/or chemotherapy and Herceptin.  I will know more over the next few weeks with tests, etc.

“It might seem morbid and perhaps even OTT dramatic to announce my illness this way but I know from experience that each time I face people or speak to others about it, it’s quite draining for me… anticipating others’ reactions, reliving the telling… so I am dealing with it my way, from a place of strength, while I have it.

“I probably can’t answer too many questions right now as I don’t have many answers.

“My husband Brian is my rock and my kids are just wonderful.  We are just doing our usual for now… like going to the beach as we did today (somewhere we had never been).  Spectacular!

“I will update you every now and then.  And in case you’re wondering, yes, I am still going to church because I believe God is with me through this journey.

“When people ask me ‘why you?’  I say ‘why not me?’ ”

I was blown away by the positive messages of support from friends, family and acquaintances, from former colleagues, school mates… all over the place.

It’s certainly one of the positives about Facebook.

That was 2 months ago.

Changed the title, cos I can

I am going through a tutorial to help me get a hang of blogging and have decided to change my title as it better reflects what I am feeling and who I am.  It’s a play on words, “specific” to “sPasifika” which I know is grammatically incorrect but that’s what it is for now.

I wanted to also fill you in a little on where I am at with my breast cancer journey.  Take a big breath people, this will be a long one.

So, let’s rewind.  I’m a little girl, living with my Cook Islands grandparents in Auckland.  My papa is actually not my blood relative, he’s my nana’s partner (that’s another story) but I love him with all my heart.  I know who my real parents are and I visit them from time to time.  Anyway, my nana gets sick.  One day, I visit her in the hospital and she doesn’t look much like herself.  In fact, she looks like a Pa’apa, a white person.  She kisses my hand because she doesn’t want to kiss my face.  This is unusual in our custom but looking back, I get it — she doesn’t want me to be close to her illness.  Then, a few days later (at least I think so, these are young girl memories), she is gone.

My world implodes.  I shift in with my parents and my two siblings.  Papa comes too but later that changes to visits now and then.  I learned later that my nana — well, I actually called her mum because she was mum to me — had cancer.  And I think to myself in my eight-year-old mind — “that’s strange, she didn’t smoke.”

Fast forward to my adult years when I have my first child.  I stumbled across my nana’s death certificate which states “carcinoma of the cervix” as cause of death.  This is post- the Cartwright Inquiry and so the words “cervical smears” are all over the media.  That’s when I realised that my nana did die of cancer but not from smoking.  I end up speaking with my doctor about it and he tells me I am a high risk patient.  I have some testing done and we discover abnormal smears which get lasered off in Kew Hospital, Invercargill.

These experiences compared with a few other periphery ones, cause me to be quite pro-active about my health.

Really fast forward… to 2010 when I turned 45.  I rock on up to the mobile breast screening clinic.  No problemo, do the deed, great nursing and support staff, over and done in just enough time for the hubby to take the kids out for an ice cream and back again.

Then I get a call back, then comes a biopsy, then some other stuff I can’t quite remember (because that’s what happens, it becomes a stressed out, crazy blur) and then the diagnosis.  “May Seager, you have breast cancer” (no drum roll).

But it’s not too bad because they have caught it early.  It’s what they called DCIS (like NCIS but without the special effects).  That stands for Ductal Carcinoma In Situ.  Which basically means the cancerous cells are in a duct just working away at causing havoc in an otherwise perfectly healthy body.

I’m the sort of person who has to visualise things, draw pictures, diagrams or whatever, to help me understand things.  So I likened it to an electrical cable, with the cells stuck inside going nowhere — yet!  Once they get out, it’s “party at May’s house”.  The best solution was to have a mastectomy.  So I did, it was a huge deal because we didn’t know until after the operation, whether they got it all.  It entailed a five-hour operation because I opted for a breast reconstruction operation too.  I called it upcycling or backfilling.  (One of the other things I need to add is that I have a strange sense of humour).

They used my stomach tissue  to become my substitute breast tissue to give the appearance of a breast.  I was quite pleased they were able to do something about that excess puku which I had been trying for years to shift after an emergency Caesarian operation.  Its only real useful purpose was as a cushion for our gorgeous cat.

I had five months off work (my employers were very kind and supportive) and was clear of cancer.  They had also removed a sentinel node — I love the use of that word for some reason, very heroic — which was also clear.

From whoa to go — my first mammogram to surgery — took just two months.  In my experience, when it comes to breast cancer, the New Zealand health system moves incredibly fast!

Within two years, I was basically back to normal.  I had undergone a few small procedures but nothing to worry about.

Moving onto 2016.  I had been experiencing some pain in my left arm (same side as the mastectomy).  It came to a head in September.  I had gone to my wonderful niece’s wedding, pulled an all-nighter helping with the clean-up afterwards but my arm leading down to my armpit was causing me excruciating sharp pains, discomfort, lack of sleep and just plain old grumpiness, which isn’t at all like me.  I massaged it, gave it hot packs, took Panadol, tried everything.  In my ignorance I thought, I need one of those damned lymphodoema sleeves. However, after a visit to the doctor, it seemed there was more to my problem.  Compounded by the holiday season, I wasn’t able to have a mammogram until late January and following that — you should know the drill now May — tests, biopsy, bloods and finally a CT scan.

My husband and I were pretty sure that I had cancer again, but I didn’t quite know how or why.  A few years back, the health authorities and experts were saying that one in every 10 women in New Zealand were getting breast cancer.  And if you had gone through it once, your chances of getting it again were increased to eight out of 10.  Those are huge numbers with breast cancer being the number one killer of women in Aotearoa.  I have looked on a few sites lately and they have changed their angle, saying that 3000 women are diagnosed every year.  I am not sure that actually drives home the message but there’s plenty of great information out there if you go looking.  eg.  Breast Cancer Foundation, the Ministry of Health screening programme, Breast Cancer Aotearoa Coalition, the Cancer Society.

In all this, I need to say that we were praying to God for guidance, understanding, strength.  But I never asked why me?  And the simply answer to that is — why not me?

I believe that as Christians, we are not immune to the suffering and hardships of the world we live in.  We are humans, none of us are perfect.  Hurricanes happen, cars crash, people get cancer.

I accept my illness but I don’t want it to define me — I know a lot of people are using that phrase these days.  But it is true.  My main concern at the moment is to survive my five months of chemotherapy and to work out “what next”?  I am quite certain there will be a “next”.  For now, I really believe that God wants me to understand what it is to “rest in him”.  So I will draw on his strength, look to my family for their support, look to my friends, work-mates, church family, neighbours and allow them to show me the love that they feel they wish to give me, in whatever form it takes.  Because they can and because I need them.

It’s a huge lesson in humility, a bit like a concrete pill or a chill pill but nah, this one is totally different.

 

 

 

 

 

 

 

What am I doing?

Today I am starting my first blog.  It’s a bit strange because I am basically blabbing away just for practice so I can work out the ins and outs of blogging.  My main purpose is to share my journey (isn’t everyone just flogging that word, me too) and hopefully to release my need to express myself using the written form.

Once upon a time, I was a journalist, which was an awesome job.  I basically found interesting ideas, people, events in the community and wrote about them.  I loved my job.  But then I got to the stage where I had reported on so many things that I felt a bit like the guy on “Groundhog Day”, like I had seen it all before.  Different places, different people, but basically same story.  And I needed a challenge.  So I stopped and did other stuff… but that’s another post.