Wednesday, March 9, 2011

No Lucite or Nigella just Chemo

I am definitely not turning this blog into a Cancer Blog.  If I was going to do that then I would post every day and make a book out of it, like this lady (thanks for the tip Lou I have now read her book and 'enjoyed' it, if that is a word that one can use given the subject matter!).   But I don't feel the need to document every single up \ down, needle in\ out, drugs-Chinese herbs-homeopathic remedies taken \ swallowed.   

Having said that, this blog is about both stuff I like and stuff that happens to me, and BC is certainly part of the latter . And it is sure taking up quite a lot of time at the moment. 

I have had quite a few questions about it so I thought it might be interesting to explain chemotherapy and how it works for me.    To make it more palatable I have interspersed some current garden and around the house pictures.  (Every garden in Melbourne is lush and verdant at the moment. This has been the wettest and coldest summer ever, with almost half our yearly rainfall in three months.   Good for the plants, and great for our water storage).  

We planted lavender here to fill up a dead spot in the front garden and it is thriving

As someone has said to me, chemotherapy is like using a tank to kill an ant.  For me, it is overkill in every sense of the word because no further cancer has been found in me.  There may however be microscopic rogue cells floating around which are too small to detect, and that is what the chemotherapy nukes.  And as far as I am concerned, the stronger and the more powerful the chemo, the better.  And that was my specific request to the oncologist. I keep asking him if the chemo is strong enough.  He just laughs and says 'yes'.

This is the smallest of our three grass trees - again these are doing well. Note they are in a built up hill, which lowers the risk of them developing a dislike for the soil environment

Here are four  things about chemo I have learned in my crash course :

1. Contrary to many people's opinions, the chemo chemicals do not 'build up' in your system over months, making the symptoms worse and worse.  In fact, the chemo itself is gone from your system in the first few days.  What lingers are the side effects which are caused by those chemicals.  These may lengthen a bit.  The other old wives tale is that 'it gets worse'.  In most cases, it doesn't get worse.  In fact the first chemo can be the worst because one is so nervous about it.  

2. Everyone's chemo experience is different. I think pregnancy is a good analogy.  We all know people who had the worst pregnancy ever - constant vomiting or nausea or reflux or insomnia etc.  Sometimes that pain is real, other times one person will feel the same pain so much more strongly than another.   I believe childbirth and raising children give one a resilience and strength which we don't even know we have until we need to call on it.  I for one have always suspected I have a reasonably high pain threshold.  I say this because breaking my big toe 10 years ago was more painful than two drug free labours.   So whilst talking to others is useful in a general sense you have to bear in mind that they may be bedridden whilst you may be feeling off but able to be up and about.   To repeat: everyone is different.  

3.   Never ever ever read the Internet.  A lot of the information out there is from the US and UK where the treatment protocols are different.   Also, there are many posts on side effects felt by people.  This can be very scary.  See 2 above.    So now my first phase of chemo is going okay I have something new to worry about - the second round (Taxol) which according to many American women can give wrenching bone aches.   But really, I am me, and they are them.  It shouldn't really be relevant to me if Ann from Annapolis in Maryland has a terrible time with her chemo.  I may not have the same experience.  

4. Forget your memory of the uncle who did chemo 15 years ago and spent 7 months vomiting.  The nurses have explained to me that whilst the chemo drugs are largely the same from that time, what has changed is management of the side effects and the effectiveness of the anti-nausea drugs.  10 years ago my hospital would have to admit many people two days after chemo suffering from dehydration and mouth ulcers.  They now tell you to drink at least 2 litres of water the day of chemo and following and the admission rate is much much lower. 

These are those autumn coloured hydrangeas.  I would prefer the blue and white but these are looking pretty good at the moment. 

So, to the chemotherapy itself.   I do this at an oncology suite in my hospital in East Melbourne. It is a large sunny room with padded recliner style armchairs arranged around the wall.  There is a waiting area, where you check in and wait to be called through for a blood test and to take your anti nausea pill no 1.   The blood test checks for white blood cell count. If it is too low, you cannot do chemo that day.   If it is at an okay level, chemo can proceed. 

I am doing 'dose dense' chemo which means I have chemo every two weeks instead of three or four weeks.  Not because I am in any kind of hurry but this has had good results on 'young' people like me in New York and other locations, and it means the first phase is done and dusted in 8 weeks. 

the maple tree leaves are very multiplicitous this year.

The only way my body can take the dose timing is for me to have an injection of something called Neulastin every two weeks.  This amazing drug gets into your bone marrow and builds up your white blood cell count.   This does cause bone aches but I haven't found them to be that bad so far. 

There are two interesting aspects to this injection.  First, I decided to do it myself (as it has to be done the day after chemo and I couldn't be bothered going back to a hospital or to a local doctor).  I thought it would be a good skill to learn.  You have to inject it into your stomach (into a little pinch of fat - OF COURSE that was hard for me to find!).  If you are diabetic or have done IVF, none of this will be new to you.  Not such a big deal really.    

The second aspect worth mentioning is the cost of this injection.   This is the first and last time you will ever see a price tag here:

Yes, you read it correctly.   $1971, not $19.71.   I believe the price might come down if it was more widely able to be used by cancer patients - the PBS is covering mine but (this is for anyone of influence in the Federal Government who may be reading) it should be automatically available to all who want it without having to wait.   

(As an aside, my second chemo session started with a bang. Just outside the hospital I managed to drive straight through a red light in front of 3 manned police cars.   I slowed down waiting for them to catch me and fine me.  My mother said 'Okay - I will burst into tears and you tell them you are having  chemo'.  But they either didn't see me or didn't care so I missed perhaps my best Cancer Excuse Opportunity so far.)

Once you are cleared in blood count terms, you pick a lovely armchair and they hook you up to an IV with saline and anti nausea drugs no 2. And then they drip drip drip the chemo into you. The first, Andramyacin is bright red.  This is the bad stuff.  The nurse has to stand over you whilst it is going in to make sure it is going into the vein and not the surrounding tissue.  

Then comes Cyclophosphamide, which takes a bit longer as the bag is bigger.  

All up, done in two to three hours. I spend my time talking to whoever has come with me, or reading my Kindle, or looking (not too obtrusively I hope) at the others around me, trying to imagine their lives and what they did and thought about and loved before this happened to them.  

It goes without saying that cancer does not play favourites.  A wide range of people are here - the burly tattooed man who sits quietly with his aged mother, the elegant silver haired cashmere wearing lady, men sitting with their wives, doing the crossword or staring wordlessly into space, a young girl who appeared one week with her tiny baby and husband, looking tired and drawn (the next time I saw her she looked fantastic), youngish and older men, in suits and shorts, and women in suits, wigs, scarves, high heels, trainers and everything in between.  On Monday a women receiving chemo mentioned that her husband had lymphoma.  I thought: how much bad luck can one person have?

Aren't these beautiful?  I bought them this morning and instead of the usual round bowl thought I would use a tall vase.  

Having said all that, it is not a depressing place.  The nurses are incredible, and laugh and joke but are always super professional.  Almost all the other patients look completely normal and healthy, like me.  

Then come the side effects.  For me they have been mostly just nausea and towards the end of the week, tiredness. I fall asleep on the couch at 8.30 pm, and am going to bed early.   Not sleeping that well but that is another matter.   And I seem to have become a bit anaemic this week so I am eating lots of red meat and beetroot and dried peaches. Oh and my hair of course is still falling out.   Not planning to mention that again.  

This fireplace is still looking a bit too zen - one day that large gilt mirror will appear from the sky, I hope

It is not unbearable, have to go to bed pain.   For me, it is manageable pain, which definitely fades if you are distracted.   And of course there are so many anti-nausea pills and other things to take. I have gone from being someone who, in deference to my Scottish Protestant heritage,  never even took a Panadol for a headache,  to popping literally dozens of different pills a week, sometimes, because of the homeopathic stuff, it is more than 15 per day!  

My biggest fear, as a lawyer, was what is called 'chemo brain'.  I was told that this can last for months and months and the thought of having difficulty processing my thoughts was quite horrifying.   Whilst I have had some fogginess, it seems to come and go.  It is a bit reminiscent of a red wine hangover, without the headache and the memory of a fun time the night before.  At this stage, to my great relief, this part of it does not seem to be permanent. 

Current bedside reading, many half finished alas.  I am looking forward to the Amy Chua book about Chinese mothers. I would like to be a Chinese mother in some ways. 

I do hope this has demystified some of the chemo fables.  I was quite terrified going into this treatment stage, and for any of you unfortunate enough to do it too,  it will hopefully not be as bad as your imagination might make out. 



Ann said...

Wow. You perhaps should be writing that BC book. will store this post away in the back of my mind and hope I don't need to read it again for me or a friend. I hope you can also put it aside when this round of treatment is over and every one of those cells is dead and gone.
Multiplicitous is now my word of the week. A x

Anonymous said...

Great post. Thoughtful, informative and quite likely of some reassurance to others. Thank you.

And you'd like to be a Chinese that came as a bit of a tell!

I saw Amy Chua interviewed by Charlie Rose, you may find it of interest.

Raina Cox said...

I love that images of flora illustrated this post. You're in a good place.

brismod said...

I really had no idea what people went through with chemo, nor have I ever imagined what it would be like. You did well to explain it, Jane.
And the price of that injection! That's the equivalent of a vintage Danish chair injected into you every fortnight...!

Take care and keep strong! xx

Kerry said...

You my dear Jane, are an absolute marvel. I hung off every word of that. So informative, pragmatic, honest, hopeful. And your brain is clearly working at full speed. Anyone who can use multiplicitous in a blog post has absolutely nothing to worry about :) Thank you.

emmaonafarm said...

Wow....send your post to the BC organisation it would be wonderful for people going down the same path to are to be admired for writing such a wonderful post about a definately not wonderful subject...thanks..

Amanda (Small Acorns) said...

Like Ann, I hope I don't have to recall this post, but how brilliantly you've written it. It must be hard not to read and take on board all the rumour and conjecture around cancer and chemo and I thought your analogy to pregnancy was perfect. Everyones experience is different.
Stay strong and calm. Xx

Toni said...

I hope with all my heart that I never have to refer to that post but if I do, I'll be very thankful for it.

I was initially horrified by the price tag, then intrigued by the 42 cents tacked on the end. Seems a little ... superfluous?

Makeminemidcentury said...

Maybe you should write a book. That was very interesting and level-headed ... what every Australian woman needs to read if she's trying to deal with hearing she has breast cancer.

You're not a celebrity, not American, dealing with it now, you have children and a garden and love books and are curious about others. I think a lot of women would relate to your story and find strength in your experience.

Shayne said...

Great post - thank you so much for sharing :)

My Mum had BC, and was 'lucky' enough to only need Radiotherapy and a Lumpectomy (and had lymph nodes removed which she said was the worst part, along with the burnt skin from the radio), I am grateful she avoided chemo.

You sound like you have a great attitude toward your treatment and recovery, I wish you all the very best. Love the blog and thanks again for sharing.

Mary said...

Thanks for sharing your experiences Jane. It was a very informative post and an interesting insight. I'm glad to hear that you are holding up so well, I'm sure your positive attitude plays a big part in this. Also, I can't believe the cost of your injections and that some people don't have access to these!

sue said...

I like the calm way you have explained what is involved in chemotherapy. I believe you have reassured many people with your matter of fact explanations.

Although it is knowledge gained at a horrible personal cost, you have provided valuable information to your readers.


Susan G said...

I just found your blog. I am 53 and was diagnosed with BC 13 years ago. I am also a lawyer in the US. :) Hang in there - do what you have to do. Be positive when you can - and remember it is also OK when you're NOT positive! I used to get all stressed out when I couldn't be positive because I thought that was a bad thing. Whatever you feel is what is right!!

If you ever ever need to vent or whine or whatever in a less public forum, PLEASE feel free to email me.

Best wishes to you.


Life In A Pink Fibro said...

Great post - Informative, interesting (if that's the right word) and interspersed with so many relaxing pictures. Good luck with it Jane.

Anonymous said...

Wow, thanks for sharing. I had no idea what it was like (although I came close myself). Honestly I've been too afraid to ask! Well done you. And I trust that the blogging is all part of your healing process too :)

Lou said...

Wow. Floored by your honesty again. And the level-headed way in which you present this. I have a friend who is experiencing the same time scale as you and similarly she reports the 3 hour wait in a room of unlikley (unlucky) candidates. I am sure this is stuff that everyone is afraid to ask and you express fears that we all have. The best part? You make it sound...and I don't want to belittle it...but it sounds OK. Not unbearable and life-destroying. As you say, everyone is different; it's luck and I suspect a healthy dose of positive mental attitude. So as ever - thanks for sharing and I am pleased that blog reference helped...she writes well too! Much love, Lou x

Jenny said...

Thanks Jane, a great post and I 'enjoyed' (really is that the word? probably not?) reading every word as I didn't have much of an idea of what happened either. You write so well and you sound like you are doing ok. Keep it up and write whatever you like. ;-)

Sarah B said...

Thank you so much for sharing. I love the honesty and the gentle way in which you write. It sounds like you are doing all the right things, hitting that horid 'thing' hard. It'll be gone soon.
We know whatever you say about your journey at the moment, this will not be a cancer blog, but a blog about your life and the different path it is taing at the moment. As I said, thanks for sharing. Take care xx

Jeanne Henriques said...

Jane, thank you for writing this descriptive and honest account of what you are experiencing at the moment. I have friends who have been in similar situations and I always felt uncomfortable to ask. You have given me another perspective and I am grateful.

I imagine speaking and writing about what your are experiencing is therapeutic to you as well. Your garden photos are are taking in the best of the beauty around you.

I am so glad you mentioned about staying away from the internet when sourcing information. You are so right, it can be a very scary place.

You have great support here amongst your friends in the blogging world...women helping women thru the written word. Very powerful!

Best wishes Jane...thinking of you in Surrey.

Jeanne xx

Claudia Lane said...

Dear Jane, I think you are an amazing and inspirational woman. I'm deeply touched by your post. I wish you all the best from the bottom of my heart

Jane said...

Take a bow, dear Jane. This is informative, factual and so insightful. I find your pluck and equanimity absolutely awe-inspiring. You're one classy lady. J x

Marcy said...

Thank you so much for providing such an honest account of what you are going through. Too often our imaginations are so much worse than the reality, and as you've said it is a different experience for each person. It is so good to throw back the curtains on those areas that we fear. Thank you for doing that. {The photos were beautiful too.}

P.Gaye Tapp at Little Augury said...

Jane, your garden and house inviting, your narrative enlightening, your spirit inexhaustible. sending lavender light your way, and lastly-where would we be without our mothers. be well-gaye.

24 Corners said...

Jane, this is such a level headed, experiential look at your *is* and *will be* a great blessing to others who will have to go through the same and also for their loved ones.
I knew when this whole thing started that somehow you would give the gift of your strength, resolve, humor, and big heart through your writing...and your last several posts have done just that. Many will read these and be helped tremendously...thank you for sharing so much, so well.

Love your hydrangeas in the tall vase...them stems are so architectural and the blossoms are beautiful, as are your outdoor images!
Continued strength & healing...
xo J~

Thea said...

What a great and informative post. I think having a positive attitude helps your body cope better too. I've seen my husband recover well from Cancer because of that. You are very brave. Thank you for sharing. x

lesley said...

Getting it down on paper (screen) helps to remove it all from your head and leave much more space for the other good things in life like the garden and of course your children, family and friends the most important things in your life. Blessings. Lesley

Danielle Sigwalt Interiors said...

So kind of you to share your experiences. I'll pass this along to my friend and I am still wishing you the best! xx Danielle

Unknown said...

Thank you for sharing your experiences. I really didn't know very much at all about chemo so it was so interesting to read. And when I saw the pricetag on that drug I nearly choked! Imagine people in countries who don't have PBS's etc like we do, scary! I hope your experiences continue to be ok, you are so brave Jane. Giving you a big hug 'virtually' :)

Linda C. said...

A wonderful and enlightening post.Thank you so much.
My very best wishes to you.

The House That A-M Built said...

You are an inspiration Jane. Thank you for this post. A-M xx

Kathy said...

Hi thought I would tell you that my Mum had two bouts with C and now she is 87.Mum has outlived all her siblings. At one stage when she was about 50 she told me that Anysley Meares (think I have spelt the name wrong) was a great inspiration to her. Surprisingly she never gave up smoking but was always eating the freshest vegetables possible and went through humungous bags of carrots etc to juice. When she was in her seventies some medicos asked her what she thought was the reason for her longevity. Her answer was- don't cook just eat or drink the fresh ingredients.

Caroline @ The Feminist Housewife said...

I feel weird saying that I "loved" reading this; but nonetheless, it was incredibly insightful.

New to your blog and enjoying it! I'll be following... = )

Rebecca said...

quite nearly choked on my lunch when i saw that price tag! YOWSERs!
i guess it's good stuff for that price, though. and that's what you want!
(garden is looking lovely, btw!)

Unknown said...

I feel very humbled to read this Jane. An honest account, showing great strength of character, good humour and a keen eye for the things that matter. Keeping on keeping it real. Gardens are good, huh.

Sister Golden Air said...

Thanks for sharing! Good luck with the rest of it all , you sound like such a strong woman.

Lots of love. xxx

Millie said...

Dear Gorgeous Girl - you have NOT got chemo brain. You have writen this fab post with the normal degree of erudite, witty, pragmatic, wise intelligence I love you for. Tip #3 resonated with me. If I hear one more celebrity state that their cancer was a 'gift', I'll chuck a brick at the telly. What a load of hog wash. A gift comes in a blue Tiffany box & gives you more pleasure than you ever thought possible. In my experience The Big C does not.
Millie x

Daisy said...

Truly inspirational. Sending you a big hug from the U.K. xxxx

Mise said...

The price is incredible, and untenable. And the chemo sounds really, really horrid. Millie has hit the spot with her comment - it's the pragmatism that makes your description of the experience such a contrast to the usual fluffy bitterness on the road to salvation. The all-defining disease isn't defining you, no way, and we knew it wouldn't.

I can see why you'd read Reacher - it's almost cartoonish, isn't it. Once I had a terrible year, and I read steadily through all of PG Wodehouse - it was a parallel life when mine was no good to me.

Samantha said...

Hi. I cracked up at your combo of the ins and outs of chemo alongside photos of nicely styled flowers and tables. Hang in there, honey!

Elsa May said...

A thoughtful and honest post - thank you for being brave enough to talk about the ins and outs of treatment, and dispel some of the myths surrounding it. Am pleased you're doing OK - too bad you didn't get to use your cancer card - I tried using mine when I backed into the Turkish Ambassador's car but it didn't work, in fact the whole thing almost turned into a diplomatic incident :) And I cried! perhaps I should have whipped my wig off.... As a NZer living in the States I agree the treatment protocols are waaay different - they sure like their pharmaceuticals here that's for sure! Take care Jane. Best, Annie x

Dumbwit Tellher said...

Hi Jane; I sincerely thank you for sharing all your experiences with going through chemo. I suspect that it may not always be easy to share. You have helped de-mystify the process and for those who have not personally gone through it, helps us know what someone goes through. When my mom would speak of her experiences it was hard for me to take it all in. I think your best advice is #3. We are all unique and all have different pain tolerances, and experiences. Mom had said just the same as you that when she went for chemo, she saw all ages. She always mentioned how amazing those nurses and physicians were. They all started to feel like family to her.
Jane, I think about you all the time & I send you great love and prayers. Your strength continues to inspire me.

xx Deb

count it all joy said...

As usual, Jane, you are leading the way with thoughtfulness and class. This is a great post, informative and very helpful. Sometimes it's hard for those of us standing alongside to know what is the helpful thing to say or do. You make it easy. We'll just love you, the way we've always loved you and for all the same reasons. Meredy xo
p.s. hope you've got your package by now:)

posie blogs Jennie McClelland said...

You're just so amazing Jane, you have answered so many questions many people foreign to cancer must wonder. Wishing you well, love Posie

Anonymous said...

Very interesting post. You are being incredibly brave. All the best to you.

Glamour Drops said...

The images of your incredibly beautiful garden interspersed between such honesty shows how extraordinarily you are handling everything. I am in awe.

Fini Seattle said...

Linked to your Blog from your comment on MFAMB. Love the tone of your writing. I will be reading and cheering you on from Seattle.

First House on the Right said...

I have just discovered your blog today and of course spent a lot of time reading it. I wanted to wish you all the best with your situation and hope for some very good results for you. Nicolex

First House on the Right said...

Hi again Jane, I just wanted to say thanks very much for dropping by my blog and becoming a follower. I certainly didn't expect to hear from you given how busy you are and I wanted to say thanks for the support! Nicolex

Janine Marshall said...

Hi Jane,

Thank you for sharing, I enjoyed this post for the way in which you wrote it, so elequently.

Much love and strength to you.

Take care
Tassie said...

Jane, what a post - I feel odd saying it was so interesting ... but actually it IS - its great to get a better understanding of the whole thing ( echoing those above it would be great to never need to know the ins and outs again)
best wishes


jules @ The Diversion Project said...

you're amazing jane xxx

Cams said...

You make all the cancer patients inspired in your blog post,,hope you will get better soon you are such a strong person.

Susanne said...

I happened upon your blog quite by accident, but maybe it was fate because I saw the word "cancer" and knew I had to stop here and read what you posted. It was like looking into a mirror, no not for myself, but what my husband has been going though since the day before Christmas...myeloma. Some interesting thoughts have come from others in this fight for life...from the gal who came into my husband's room to clean the floor, "God does not see your face, he does not care if you are rich or poor, young or old, he only sees your soul"....from our oldest daughter, "Dad, you are still alive and living, the only difference is that now you are just living with cancer, your life is not over yet"....we have had so many people who have added this family to their prayers, and I find myself praying with just about every breath. I am learning to become more patient, ironic, because I am a nurse of 26 years. He is now in his 4th round of chemo and doing well. His doctor believes he is in remission already. Next comes the bone marrow transplant. Jane, your experiences echo the ones happening here and in millions of households around this world. None of us has the promise of tomorrow, just the moment. And when I say my prayers they will include someone named Jane♥

Vicki Lane said...

Dear Jane, You are doing such a service to all who may be facing chemo at some point. Thank you for being you.
And I'm totally stealing the long stemmed hydrangea idea -- they look great. Of, course, I'll have to wait for mine to bloom.

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