chemo

Don’t call me sweety

10997206_10152768772784506_432502217_nI’ve decided to shun the wig. It was like wearing a woolly hat on those hot days and I almost drowned in my own perspiration. Maybe I’ll wear one on special occassions. So far two people (men) have said ‘Why aren’t you wearing your wig?’. The women all call me ‘sweety’ and pat me sympathetically on the hand. It’s quite funny to see the reactions of people I know. My Dad didn’t recognise me! The best of all was my friends son (who I have known since he was a child) who said ‘wow, I love the way you’ve cut your hair’. I was cheerfully dancing at that comment because he didn’t realize I had chemo hair. He may be a hippy but he made my day. Actually, I have to confess I’d always wanted to cut my hair really short (being an ex hippy myself) but I was worried that it would look bad and I would regret it and cry into my pillow for 100 years. So I’m trying to embrace it and so far so good. Just don’t call me sweety and pat me on the hand or I’ll have to show you just how sweet I am and get violent ha ha.

Mammagard

I’ve been struggling with nasty hip pain over the last 2 weeks. They tell breast cancer patients to get all new pain checked out but I have arthritis so I’d be wearing a track to the hospital if I did that. This is new hip pain is on the left side which is new, so I went to have a bone scan this week. I’m getting very little sleep from the pain. Arggh. I was all excited about bouncing around like a rabbit from here on. The problem with it is that I can’t get a massage or go to my usual chiropractor because laying on my stomach is uncomfortable with the breast tissue expander. My friend has invested in an Australian made product called ‘Mammagard‘ and I had the honour of meeting the ‘inventor’ who is an osteopath. He is selling his kits like hot cakes in the US and I feel privileged to have the use of one. I got to sleep on my stomach last night and that was awesome! So I’m hoping to get a massage and treated by my chiro/myotherapist next week. He said I can use it for my Body Balance class also but I’m not sure if I’m that co-ordinated. Soon I’ll be bouncing around like a rabbit for sure:) http://mammagard.com/

If you find laying flat uncomfortable for whatever reason (breast related) let your Physio/chiro etc know about it because they can buy a kit.

Burns

I know I’m starting to sound like a walking advertisement for products but I swear it’s just that I feel so enthusiastic when I find something great. Do you know my radiotherapy burns went from horrid, purple, infected and very very painful to remarkable healing almost overnight. I’ve been piling on the Moo Goo (also an Australian product) and it’s beginning to look better than my other skin! I told the plastic surgeon yesterday and he could hardly believe me when I said what a state I was in just 2 weeks ago. He said he would have cried if he saw it. They are very sensitive these plastic surgeons. BTW he told me I have not got enough stomach (still) to do a TRAM flap so he might have to use butt or thigh tissue. I am devastated. I’ll leave it to you to decide if I’m kidding or not.

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Dishmoptop makes a comeback!

Hey I have a hairy head coming! My head is the only place it’s growing so I’m guessing the Nioxin hair booster is doing it’s trick. I still have no eyebrows but I’ll continue to draw them on (badly) as before. The hair on my head is WHITE and the texture of cotton wool. I might end up with a white ‘fro’ at this rate as my hair was already curly and most people get curly hair after chemo. At some point I’ll shed the wigs (which confuse people enough as it is) to my new hair. I’ll be glad for the cool air.

Just to give you an idea, I look like this except my hair is only about 5mm long:

Radiotherapy is going as good as expected.My friend Jan, who works at Pharmore in Croydon is my helpful expert on products. She is trained up on ‘Moo Goo‘ so I’ve been using it to prevent burns and to stop my skin from shrinking. It’s a fantastic product and it’s AUSTRALIAN. It was originally used on cow udders. I’ll leave the irony with you to figure out. The nurse at radiology was very happy with me using it as I can’t use anything with perfume, alcohol etc in it and I need to apply it 3 times per day. I’ve mostly had 8.15am daily appointments which is just what I wanted so I’m doing a happy dance about that.

Last week I had a burst of extraordinary energy. It was like I’d been drinking Redbull or something. I cleaned out cupboards, re-arranged furniture and began illustrating 3 children’s books at the same time.

Now the fatigue from radiotherapy is beginning to hit and I’m back to wanting sleep. At least I had a week of being my old ‘propeller head’ self. I suspect the MOTH is a little relieved because my energy usually involves work for him he he.

 

Squeaky bits

Thank God for wigs

Thank God for wigs!

The MOTH told me that if he bought a boat he would name it after me: ‘Gone with the wind’. I’m not sure which part of me he was referring to but I think he meant the departure of ‘leftie’.

Speaking of ‘gone with the wind’, my hair is refusing to grow back. The first two types of chemo I had it started growing back prolifically after 4 weeks. Now 6 weeks after Carboplatin and Taxotere my hair is STILL FALLING OUT! Well I did the stupid thing and checked Google. There is a group of angry women out there who were not told that Taxotere can cause permanent hair loss. Some people found it was very slow and took years to get a light crop of hair. Others have permanent hair loss.

Screenshot 29:12:2014 4:05 pmOf course, life is more important than hair but sometimes it doesn’t help women to re-gain their self esteem and get back to normality. The hair I have left has gone white and like cotton wool. It’s sparse and like I said, still falling out.

I REFUSE to believe that my hair won’t grow back. It’s usually like a blackberry bush. Strong and prolific. I’m hitting it with $140 worth of Nioxin hair booster which I put on in the shower. Then when I rinse it off it washes all over me so I hope I don’t end up like a gorilla!

Squeaky bits

Since my tissue expander is now dislodged and no longer attached to my muscles I can move it around. OK. Don’t think about that too much. The weird thing now is that It SQUEAKS!

My dear friend Gail gave me a loving big hug yesterday and I got the giggles because it squeaked.  I had to demonstrate it to her to explain why I was laughing. She is very impressed. I think she wants one too.

Sigh. How am supposed to soar like an eagle?

Radiotherapy starts tomorrow at 3.30pm. I hope my bits don’t squeak. It would almost be as embarrassing as last week when I went there and discovered the glitter from my Christmas table cloth had fallen into my bra. The radiotherapy guy didn’t mention it and so neither did I.

Whoever thought cancer could be so amusing?

Ah Magoo you’ve done it again

Week two after chemo I’m usually starting to feel pretty good but this week I’m full of side effects. They aren’t new… Just lasting longer. Some say ‘it’s about time’ but I say BOO HISS.

  1. I have chemo brain galore and have messed up 2 events this week… one being a very important medical appointment. I was so cross with myself for missing it and now I have to wait 3 weeks for another appointment and that will be at Peter Mac.
  2. My muscles have gone into meltdown. They even go to jelly climbing the front steps at home.
  3. I want to go to sleep all day long. I have restricted myself to 2 hours in the afternoon.
  4. My vision has gone weird. I can’t see long or short distance very well and given that I usually have perfect long vision this feels pretty strange. I hope my artwork is as good as it looks through my eyes or I will be very embarrassed. I’ve turned into Mr Magoo.
  5. I’m seeing eye floaties. They are little black puffs of smoke that look so clear and real that I keep trying to catch them. My friends at the dinner table the other night were giving me strange looks. You would think they would be used to my oddness wouldn’t you? I thought it was a cobweb coming from the ceiling. Someone’s going to put me in a straight jacket.
  6. The muscle around my left eye twitches constantly.
  7. I still have a very strong metallic taste in my mouth and food isn’t as good as it looks or smells. Usually this goes by week 2.
  8. I feel cold constantly. That could be handy when the Summer arrives.

I went and did my Les Mills Body Balance class today for the first time in 2.5 months and made it through the hour session but it was disappointing. Tomorrow is my running day with my friends so let’s see how fast I can hobble!

Hopefully week 3 will give me a break from side effects. Then, on Dec the 9th,  I have MY LAST CHEMO. Providing I remember to go. Yippee.

The MOTH survives more injuries

Bargara beach

Chilling at Bargara beach

We are back from a wonderful 2 week holiday at Bargara in QLD. It was possibly the best holiday ever… mostly because we both needed it so badly. Having the beach 20 steps from the door at our resort and the golf course out the back suited us both fine. The MOTH came packed with his golf clubs with his bare essentials stashed amongst them. Who needs clothing in QLD? I was almost as bad as my case was filled with art supplies. I am a very light packer when I travel so we had one small suitcase between us and a set of golf clubs (plus 2 carry on bags).

Screenshot 19:11:2014 5:45 am 2Our friends Tony and Lorraine spent the first week with us and we took a day trip to Fraser Island and a few other wonderful and not so wonderful trips pioneered by our ‘tour guide’- The MOTH. It was lovely to spend time with them once again on our holiday and share hysterical laughter.

The MOTH and his injury collection

I totally forgot I was a cancer patient (well almost) and Maroondah hospital seemed so far away. I love the beach and ended up tanned and relaxed. Sigh.

Col feeding the exotic fish at the waterhole outside our resort.

Col feeding the exotic fish at the waterhole outside our resort.

THE MOTH… on the other hand… had injuries almost akin to his splinter episode.

  1. He played so much golf that he became very sore all over. At one point he climbed into a plane at the Hinkler museum and became wedged half way because his muscles wouldn’t do what they set out to do. He had a panicked expression on his face which I could do nothing about apart from laughing.
  2. He walked on hot concrete without his shoes on and got two 50c piece sized blisters on his heels. At one point he couldn’t walk and I had to stab the blister with a pair of nail scissors to drain it.
  3. He got badly blistered and painful calves from ‘golf’ sunburn.
  4. He was and still is, covered in sandfly bites.
  5. He got stung by a wasp on the hand and further up his arm while looking for a golf ball in a bush. This resulted in severe swelling and itching.

I considered calling 000 but I was too busy reading my kindle on the beach. Do the ambulance come for self inflicted wounds?

Art therapy

Prior to leaving I finished illustrating a childrens’ book for Jojo media (a book publisher) which was great to get behind me.

I managed to finish off 5 commission art jobs while on holiday and quite a few pieces of my own. This might sound like I was working but believe me… it’s quite the opposite! I go into some kind of trance when I’m doing my artwork and it’s the ultimate relaxation. One of the pieces I finished was inspired by a magical experience we had watching a massive turtle come up onto the beach and lay it’s eggs. I think it was up there with the most wonderful thing we’ve ever seen. It didn’t have cogs and wheels like my art piece but you know how my brain works. Colin thinks my brain is terrifying.

Medical news

My hair is falling out for the 3rd time. Just when it starts to get about 1 cm long or so I start another chemo round and off it goes again. Each time it grows back it’s a different colour. Unfortunately it’s white and snowy this time so I’m happy to wave it goodbye.

You’ll be pleased to know that I managed to run 2-4km on alternative days… often on the beach. I didn’t run very WELL because my fitness has gone downhill since surgery but it’s a start. At one point I was overtaken on the beach by a guy dragging a car tyre  along behind him. Maybe I need one of those. Apparently they make you run faster:)

Chemo day drawing

Chemo day drawing

Yesterday I returned to the chemo factory for another dose. I’m totally creating my own world. The doctor told me that they have me written down for 6 extra doses of chemo, rather than the 4 we agreed to because I am tolerating them so well. Colin and I both said ‘no’ in unison. The Dr agreed that there is no evidence it is doing any good and that it’s just to make sure. Enough is enough. Do I keep taking it until I’m not tolerating it anymore? I don’t know, but we have no way of measuring it now. Besides… I might be ‘tolerating it well’ but I do feel very unwell after it, of course. It’s not like I’m just shaking my head and carrying on! Given that the last two chemo drugs didn’t work it’s difficult to say if this one is. I’ve had radical surgery and … I have 25 days of radiotherapy after Christmas and the break in between will be much appreciated. 9 months of chemo is ENOUGH.

I also refused to take the Dexamethasone (cortisone) all together. Last time I took it the 2 days before chemo, during chemo but not the prescribed 4 days afterwards. This resulted in a significant reduction in stomach pain and nausea. I had a very nasty sore mouth and throat which resulted in lots of ulcers but that’s bearable. In fact I didn’t need to take any anti nausea at all, just the usual 3 Somac for the stomach pain. Isn’t the purpose of cortisone to reduce nausea? Strangely enough it is a side effect in itself, as well as burning pain in the stomach. So I didn’t take it before my chemo yesterday.

So… the doctor gave me a double dose of cortisone in my chemo infusion yesterday so that I wouldn’t have an allergic reaction. THAT’S WHY I’M WRITING THIS BLOG AT 5am!!! I even took a sleeping tablet. I’m like an Eveready battery advertisement. My brain has gone totally haywire. At least the sleeplessness is only for one night.

My sister and Dad came to visit me yesterday in the chemo factory… partly because Dad had an appointment at Maroondah and partly because it’s like a party in there and we all have a lovely chat. The nurses get involved in our banter. One nurse told Colin he is the King of Bull @#$% and the receptionist told him to ‘be quiet get out of the room’ (or something similar). He invites all of this so don’t feel sorry for him. Of course they were only kidding. I think he will miss stirring them all up when I finish.

One more chemo to go (9th of December) whoot!!!

On a sad note, two friends my age have died this week. One was a female fellow cancer sufferer who has been fighting fiercely along side me. My heart goes out to their families and friends, particularly their wifes/husbands and children. On that note… kiss your loved ones today and live your life with integrity. xx to you all from me.

Sharing my story

Screenshot 29:10:2014 7:01 pmWe are off to Bargara in QLD on Saturday. After having my 17th chemo treatment this week it could be precarious but I so love a challenge. Drugs and a vomit bag if I have to… but I’m going. So far the side effects have been pretty good but it’s always day 3 onwards that I struggle. Bring on the drugs.

I managed to find a doctor who said I could go in the pool as long as I kept my face out of it. He is my best friend and I didn’t have to pay him too much.

I’ll return to Melbourne in time for my next dose of chemo all lively and refreshed.

ALSO the MOTH has un characteristically agreed to booking flights for our Europe trip next year. There are some doctors under the belief I’m having another 6 months of chemo and some say 4 months. I’m going with 4. Then I should finish radiotherapy in March which will give me time to recover before we fly out in May. So it’s pretty risky given that I won’t get insured for travel with a pre-existing illness… but I’m going. Here is our vague itinerary which we will manage ourselves because we hate tours:

We are meeting up with lots of friends all over Europe…

1. Malta with Rosie (1 week)

2. Sicily (5 days)

3. Amalfi Coast Italy (5 days)

4. Rome (a couple of days… beautiful)

5. Cinque Terre with Tony and Lorraine (1 week)

6. Tuscany with 10 other friends (1 week)

Croatia self guided walking tour with Rosie (1.5 weeks)

Greek Islands (2 weeks)

We fly back  in late July.How does that sound? Sigh.

Sharing my story

It’s so exciting for me to be sharing my story with others. It gives my journey and struggles more purpose and a reason. Apparently it inspires others as well. This week I have had 2 people approach me who have been reading my blog for some time and have either been diagnosed for the first time or have had a reoccurrence of previous breast cancer. Both of them have expressed that they are coping better from reading my blog. While I don’t take the credit for that and my heart goes out to them, if this crappy year has helped even one person I’m very glad. Just remember that everybody is different and not too be hard on yourself if you’re not managing.

Last week I had the awesome experience of sharing my story with the entire Luther College school in Croydon where I have been Artist in Residence (without residing there) for the past few months.  It was lovely to be supported by my dear friend Lorraine who sat up the back and quietly cheered and laughed at my jokes. I told some funny stories and hoped to get a laugh but it was hard work with that age group. My favourite one was when my daughter glued false eye lashes to my wig. There was a murmur of laughter which was nice in a place where youth are uncertain whether to laugh or not.

I have had many students and teachers give feedback which was positive and I hope that they understood my message: ‘life throws you curlies but you have to learn to re-direct yourself and look for the gold’.

Medical hoo ha

Today I went to see the plastic surgeon, which wasn’t terribly pleasant given that I had chemo yesterday and wasn’t feeling the best. He added more saline to the tissue expander and told me that ‘somehow’ it has been dislodged. Oops. Could that have been my over enthusiastic return to Les Mills Body balance at gym last week? No matter. As long as it doesn’t drop down to my waist or something all will be well ha ha. Before you start picturing it in your mind it doesn’t actually look any different. OK?

My hair has just started falling out for the 3rd time now. The poor fuzz… just when it starts to assert itself it’s gone again. Sophie lopped it off so I wouldn’t have to take the shaver to the beach with me. Now I just need a hat.

Think of me at the beach for the next 2 weeks and I’ll think of you all here at work;)

My thoughts on ‘being positive’

I hesitate to write this post because I understand how difficult it is for people to find words for others who are suffering. There are websites with advice on ‘what to say to cancer victims’, with bullet points on what to say and what not to say. This makes any sentiments seem contrived in my opinion. I just appreciate any support and I am not that sensitive to be offended by words, although I have had some ‘interesting’ things said to me!

me

My new ‘hair’ *wink*

I’ve been so touched by kindness, especially from those who find it difficult to express themselves. Several men in my life, have emailed me with messages saying ‘I’m not good with words in these situations but I want you to know that I care and I’m following your blog”. Knowing that they find it difficult and yet still reach out and express it is so brave. Many others have found it so difficult they haven’t contacted me at all. In saying all of that, why would I now criticise people for making the effort?

‘Be positive’ is a common thing to say to people and of course it is well intended. If a person going through bad stuff is positive it makes others feel less awkward and it helps people to see their way through tough times. We all know about ‘the power of positive thinking’ but positive people still die and bad things still happen to them. It’s not in our own hands to be as positive as possible in order to have a life with no downsides.

Is it a healthy thing for people to say ‘be positive’ to those who are experiencing deep grief, depression or health issues? Robin Williams comes to mind as an example. From a child he recognised that being funny and upbeat won people over. It made people feel good. The response when you say ‘I feel ghastly and I don’t want to live’ is very different to the response when he covered it up and behaved in a way he wasn’t feeling. Can people just ‘be positive’ like that? Can you just flick a switch like that? I don’t actually know the answer.

We all have a ‘default setting’ and mine just happens to be ‘positive’. It’s just the way I was made. I take no credit for it. I don’t try hard or make an effort to change my thoughts. I don’t know what it’s like to be in a black pit. I embrace change and pioneer change myself. I love an adventure. If I was depressed and someone said to be positive would that work?

Anyone who knows me well knows that I defuse negative things in my life with humour (usually black) but I will also plunge into very confronting reality and express my frustrations and issues if that’s where I’m at. I don’t cover how I’m feeling intentionally by making myself feel something I don’t. Joy and peace is more desirable to me than happiness and positivity. I don’t chase happiness. I just feel happy because I am.

The MOTH (Man Of The House) has a different ‘default setting’ to me. We speak an entirely different language and yet we complement each other and have grown to be more like each other over the years. Here is an example of a conversation this week…

Me: Our garden is looking amazing considering you hacked it back to bare roots only 4 weeks ago. Have you seen all the flowers coming?

MOTH: No I can’t say I have

ME: Really?

MOTH: I have noticed all the weeds that are growing through the mulch. I’ve had to pull them out all week.

Me (incredulously): You noticed the weeds but not the flowers?

That makes me sound like an airy fairy hippy and him like a realist… but you get my drift don’t you? That is his default setting. He is aware of it and he tries very hard to ‘be positive’ but his real joy and happiness doesn’t come from ‘trying hard to be positive’.

Colin’s family of origin is entirely different to mine. Although his was comparatively lacking in drama such as my own, his father was a prison officer for 40 years. Surely you can imagine his childhood without me going to great lengths to describe it.  They both loved him but their parenting style was more traditional (for our generation) than mine.

mum and dad

Mum with our knight in shining armour

On the other hand, I didn’t have an ideal childhood by any means. Life has been tough in so many ways. I lost my Dad when he was 23 years old and my Mum when she was 54. My father was a teacher in the middle of nowhere, Pyramid Hill. My mother married him when she was 19, had me at 20 and was widowed at 21. This left her homeless, penniless and in deep grief. We moved around from family home to family home until our knight in shining armour (Dad) saved us and married my mother. Mum told me this story as a small child as though it was a fairy tale. One day she told me I was the child in the story and I thought it was wonderful. That is an example of her approach of creative parenting.

They then had another 3 children in as many years… 4 daughters in 5.5 years. My new Dad was and is such a wonderful man and has always treated me as his own. I loved and still love him very dearly.

I promise I grew out of my witchcraft costume.

I promise I grew out of my witchcraft costume.

My parents weren’t perfect by any means but we were not hit or smacked as children and mostly had to ‘discuss’ our actions and figure out how to be better people when we had acted inappropriately. I would have chosen a smack any day. Being responsible for your actions is really tough. I used to stand there thinking ‘just smack me and get it over with’.

Because of this, I grew up with the ability to articulate my feelings and answer for my behaviour. I had deep love and respect for my parents through thick and thin. It hurt me more if they said they were disappointed in me than if they had hit me. There were no cop outs or easy solutions. My recollections of my childhood are all good. I don’t have any/many bad memories and no bitterness. I inherited my mothers ‘Pollyanna’ approach to life. Admittedly, this often annoys my children and The MOTH as it did me with my own mother.  Seeing things from the other persons point of view isn’t always what you want to do when you feel angry or hurt!

Mum was my best and closest friend as well as a role model in my life. She was a beautiful Christian woman with a heart of gold, a funny and mischievous nature, a mountain of wisdom and a whole pile of flaws as well. I could carry on with the list of injustices life has thrown me, just like anyone can. I have known deep suffering. I have needed to grieve like anyone else and struggled at times to see the flowers in the garden.

So does ‘being positive’ make me a hero? No. I am just being who I am. I am a result of my own upbringing and watching how my parents approached bad things happening in their life. They disciplined me with love and Mum role modelled to me her way of dealing with stuff. She talked about things a lot with a smattering of black humour. Well… more than a smattering.  We often got the giggles at the most inappropriate times. Of course I recognise that this trait for seeing the silver lining could also be an inherited personality.

My joy comes from my ‘positive default self’ but also from my faith which gives me the peace and self worth that I need to battle on with things. I have a crystal clear purpose for my life and know that whatever happens to me I will be ok. I believe I have had more positives from this illness than badness. That’s a pretty huge statement to make isn’t it?

Screenshot 17:10:2014 9:37 amThat’s why chemo, chemo and more chemo… with a little surgery and radio therapy thrown in aren’t going to knock me flat. It’s got nothing to do with trying to be positive. I worry for others who have cancer and a tendency for depression. Putting on that smile to make others happy can be very tough.

In saying all of that, I DO appreciate your sentiments very much and I would hate it if you felt too afraid to speak now. Say what you like. It’s better than saying nothing. I won’t judge anyone who says ‘be positive’. I know it’s just a way of expressing feelings and besides, I already do feel positive… except when I feel like chucking up after chemo!

Feel free to leave a comment and tell me what you think. I’m no psychiatrist!