cancer

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!

The Wood Hood eating plan

When The Moth and I got married, my mother was 39 years old. Yes 39. When I had Shannon she was 43 and by the time she got cancer and died at 54 she had 9 grandchildren (another 2 arrived later). I’m about to turn 54 so I have one question…. Where are my grandchildren????? I have a cupboard full of toys and a heart full of love just waiting for them. I can’t see any sign.

Mum with Shannon in 1984

Mum with Shannon in 1984

Don’t get me wrong, I’m not planning to go and meet my maker for another 30+ years but I’m feeling totally ripped off all the same. I used to talk about booties and teddy bears to my daughter in law but she took a firm hold of me one day and put me straight. You know how wicked I am. Do you think I should play the ‘but I’ve got cancer’ card? I know it didn’t work for the red Ferrari but maybe…

In the meantime, there is always my dog Marley who has his endearing side but I’ve yet to find it.

By the way… please hide this from Hannah and Shannon they will kill me!

Chemo news

I began my 3rd chemo drug combo last Wednesday which consists of Carboplatin and Taxotere. That’s 6 different chemo drugs now. 9 months of chemo in total (once I finish). It just goes to prove that I’m a tough old boot. Apparently my full treatment including radiotherapy will finish next April. Given I found the lump last January that’s 15 months I’ll never get back! Breast reconstruction will be next October but I’m not counting that because it isn’t officially ‘treatment’ for cancer.

10151282_861050327252093_4097626118249710676_nMy sister arrived late in the morning chatted to me during chemo which was nice for both me and for The Moth who went and did the grocery shopping instead. I’m sure the novelty has gone off sitting in Maroondah long ago! I was there for 6.5 hours so Margie made time go fast and I managed to draw my Christmas card with the cannula in my hand. Not with the precision I like but that ‘naive’ look can be cute:)

Prior to chemo, I had another 100ml in my breast tissue expander.  I have to say… that was REALLY painful. I’m not sure about having chemo and the expansion on the same day was a good thing. Between the nausea, stomach burn, insomnia from the cortisone and the pain from the expander I’ve had a restless time. Miraculously, I did manage to do some kind of ‘hobble/run/walk’ around the athletics track yesterday. I ate part of my breakfast too which was also a miracle.

I have to confess, I took the 4 prescribed Dexamethasone the day before chemo (and had a horrendous night sleep as a result) and again in the morning before, but I didn’t take it for the next 3 days as I should have. I don’t know what’s worse, the chemo side effects or the Dex side effects. Perhaps I’ll take it next time and see for myself. I’m creating my own world now that I am so ‘experienced’ ha ha.

Having chemo in Spring is so much nicer than it was in Winter. I can go and potter outside in the sunshine and tend to my little vege garden. I’ve always hated the cold but being unwell at the same time just added to the gloom. Hooray for the sunshine.

Screenshot 12:10:2014 11:36 am3 more chemo boosts to go (3 weekly). How many countdowns have I done now? I seem to spend my life counting down to things. My hair is about to fall out again for the 3rd time and that’s something I don’t like counting. Every time it starts to grow and I get EYELASHES, they are hit by another chemo boost. MOSTLY I’m counting down to having 2 weeks in QLD in November. We haven’t had a lot of success with holidays lately so I’m praying for this one to go forward without any hiccups! I have chemo 4 days prior to flying out so that will be ‘interesting’.

Before we go to QLD I have to finish illustrating a children’s book for a publisher and complete my Artist in Residence program at Luther College.  Phew. I thought being an artist was all about dancing amongst the daisies.

The menu at The Wood Hood

My appetite after having chemo is quite odd. Something akin to being pregnant but much worse. Even when I feel hungry, I don’t feel like anything in the cupboard. So here is the list of vaguely appealing food. You will notice that they are all CARBS and have no nutrition. So much for the healthy eating plan.

1. Fried rice from the Chinese shop 15 minutes away

2. Mixed Berry muffin from Muffin Break (with cream cheese)… also 15 minutes away

3. Macaroni with grated cheese and tomato sauce on top (an old family favourite)

4. Toast… but only as a last resort

5. Costco prawn dumplings (but I’m getting tired of them)

6. Apples from Costco. WOW vitamins.

Most of the time nothing other than these items will tempt me. Hopefully tomorrow I will pick up and then I’ll have 2 weeks of dumpling and carb free eating!

Love you lots!

Thanks to you all for your continued prayers. I know it’s been a long and boring rant but I really appreciate your cares and concerns. I feel bad that I haven’t individually thanked people for cards and kind messages but please know it gives me a great boost to have you cheering along side me.

Quick update of an exciting nature

The oncology appointment this morning resulted in clear results for cancer. Another huge relief! Now to kill off all the little suckers which are smaller than pea size and don’t show up on the tests. .. if in fact there are any! Chemo should knock them off and the 25 bouts of radiotherapy will knock off the localised areas from 20% risk to 5% risk of spread.

Hooray! I can have chemo tomorrow (!). Thanks to all the prayer warriors out there xx

Given that October is breast cancer awareness month, here’s my quirky new tshirt design…

http://www.redbubble.com/people/dishmoptop/works/12747063-breast-cancer-awareness

My breast cancer awareness design for breast cancer month.

My breast cancer awareness design for breast cancer month.

The Argentinian balloon expander

tissue_expander_unfilled_tcm8-329403Last week I attended many days of appointments but the most memorable one was the appointment with the plastic surgeon to have my tissue expander inflated by 100ml of saline.

My doctor transformed from a lovely man with a quiet demeanour, to a giant Argentinian with a grim expression… armed with a silicone gun sized syringe. He came charging towards me, closely resembling a maniac. I was frozen to the bed but in my head I was running up the corridor screaming. Colin was on the other side of the curtain being amused by my comments. I don’t remember what my amusing comments were or I would share them.

Unlike the image I have attached for your information, it was a syringe with just a needle in it. It is inserted into a port at the top of the ‘breast’ through the pectoral muscle wall and skin. It didn’t hurt at all but the horror of the advancing doctor was enough to give me nightmares for 3 nights.

Guess what? He is coming back 4-5 more times with that thing. Eek! The fluid in the expander gives me a ‘crushing’ sensation, but this only lasts a day or so.

Amongst other appointments last week, I had a CT scan and a bone scan (which took all of Friday!). This is to check the spread of cancer to other places. I’m praying for that to be clear because that definitely isn’t a good thing, since it’s incurable once it leaves the breast. The results of that will be given to me on Tuesday (tomorrow) and on Wednesday I have more Dolly Parton fluid injected by the Argentinian maniac and then I have chemo straight after.

Whoo! More poison for me. I can’t wait. *Said with a tad of sarcasm*.

9 months of chemo is a hoot. Not.

10707927_10152443593484506_400476837_nNow that the drainage tubes have been removed, I have a handy European socket in my side ready for plugging in those shavers, hair dryers and lamps. Sorry if you’re squirmish but it is pretty creative don’t you think?

The armpit and side infection is improving now that Ive had my 3rd lot of antibiotics and tomorrow I go to have more liquid put into my skin expander… or balloon if you prefer. Apparently they push the fluid in through a port which sits just under the skin, until I can’t take the pain any more. The way my pain threshold is I’ll end up like Dolly Parton.

Treatment plan

Yesterday I had an appointment with my oncologist and the radiology specialist. The oncologist advised us that because my tumour didn’t respond well to chemo and because it grew and another tumour developed, it is possible that cells are still floating about in my body or have planted themselves somewhere. So it was decided that I would have another 4 rounds of a different type of chemo. This type has also been trialled with my type of breast cancer. 9 months of chemo in total by the end of the year is a marathon and it feels like it but it’s better to get it over with and know that I’ve done all I can.

The radiologist also recommended that the type of cancer I have would benefit from 5 weeks of radiotherapy to prevent it from re-establishing itself into the chest wall. She was very thorough and informative and filled me with great confidence. I was expecting radiotherapy all along so this came as no surprise.

Yes… we have a plan but I have to admit I felt quite overwhelmed with the thought of it. I was enjoying the break and starting to feel like my old self. The MOTH keeps saying ‘I have my wife back!’. I’m giving him cheek so I think that’s what he meant. My hair is just starting to grow, my eyelashes are 3 mm long. I ate INDIAN FOOD without burning my stomach out. I’m dusting myself down right now and adjusting my sails towards the finish line again. I had an offload to my little sister yesterday. She is always so compassionate and yet very practical and it was just what I needed. She has enough troubles of her own and just needed her big sister blubbering on the phone LOL.

Chemo starts next Wednesday the 8th of October and radiotherapy will begin once chemo finishes. This chemo has the side effects similar to the first type I was on… give or take a few extras. There is high risk of nerve damage to my hands and feet, especially since I’ve already had 4 cycles of Paclitaxol. HOWEVER… I didn’t get any last time and I am not planning to this time!!! Boo to that!

My fitness isn’t so good now that I’ve been recuperating from surgery but I am going to try to boost it up a little now and keep my energy up as this has helped me immensely to overcome fatigue in the past. I’m not allowed to do any exercise until next Wednesday… which is when chemo starts. Erm.

We had planned a holiday to QLD so we have strategically booked my chemo appointments around it. My oncologist told me I can just bust the doors of the hospital down up there if need be. Let’s hope not. I can just see me on the beach with my Dolly Parton breast and my vomit bag. Nice.

I know this sounds all bad and gloomy but I can tell you now. If I had been healed instantly I would have missed out on the wonderful journey I’ve had along the way. Amongst everything, I’ve been married to Colin for almost 35 years and we have become so much closer during this journey. He is my buddy and my best friend. We have talked and talked about how this experience has enhanced our marriage and our love for each other. It’s a beautiful thing to be stripped of everything in life which doesn’t matter to be left with what does.

My sister told me today that it’s like the process of making essential oil. They use perfume and take everything away from it that isn’t necessary until all they have is the raw basic oil. This is the rich part which has the ‘essential’ and real ingredience. If I had been healed instantly this journey wouldn’t have existed. I’m so grateful to have had an experience which sorts out my life and shows me the priorities.

Arty news

Screenshot 1:10:14 7:41 AMAs I’ve said before… with all bad things comes good. I have had amazing opportunities with my artwork. I can’t keep up with orders! I’ve been approached by a children’s book publisher to illustrate a book, I’ve got my artist in residence job at Luther College and I have been selected to exhibit in the Maroondah Art Trail. TheMaroondah Art Trail allocated the Urbanlife cafe in Ringwood and Col and I popped over on Friday and hung 14 pieces of work on the walls where they will remain for 4 months (unless sold of course).

Pop in and visit if you get a chance!

 

1524853_856085927748533_7171849960007090252_n

Q: When is a tube like a straw?

A: When it breaks the camels back

Drainage tube assessory

Drainage tube accessory

If you want to hear me grumble now is the time. Perhaps I should get Sophie to do the blog from now on so you can hear happy things!

I’ve had 6 months of chemo (so far) and been fine with it, and the mastectomy surgery was a piece of cake. But…. I CAN’T STAND BEING TRAPPED TO THESE STUPID DRAINAGE TUBES! Grumble grumble grumble.

For 10 days now I’ve had freaky tubes coming out of my waist (literally) which drain ‘fluid’ from my underarm and from where my left breast was. The surgeons sew them into your body to stay in place, their job being to keep body fluid flowing out of the area/s to avoid swelling, infection and from dislodging the expander. They are doing their job, so the longer they are in the better, if there is still fluid to drain. Apparently the fluid needs to get down to 30ml per drain in 24 hours for them to be removed. They were still at 120ml (per tube) yesterday. Most people take this lying down happily. I’m trying… I really am.

You might wonder why this is getting to me. I’m a tough old cookie and I can take pain pretty well but I hate being trapped.

For one thing, the nurse comes every day to drain it. Don’t get me wrong, the nurses are lovely and do a wonderful job but I have no idea when they are coming. So I can’t plan anything (at all) on any day. I have to be at home from morning to night until they come. For example, on the MOTH’s birthday we were going to go out for lunch and to the movies but we ended up waiting until 3pm for the nurse.  I can’t even go for a walk! Boo hoo. It’s a pity party.
Screenshot 21:09:2014 10:45 amSecondly, the tubes are just plain annoying.

  • They hurt both at the site from where they exit the body and at the site they are draining from. My armpit is very swollen so it hurts to put my arm down
  • They tangle about me when I’m trying to sleep. I can only sleep on my back or my ‘non preferred side’. It’s like being trapped in a spider web.
  • They catch on things and I yank at them by accident. My best trick is to hook them up to the shower tap and then forget to unhook them before I get out. EW!!
  • They are cumbersome. I hide them in the glam bag (see photo above), but I need to wear a coat over the top or you can see the tubes. This looks kinda odd.
  • Yesterday they started leaking from the wound and I had to call a nurse to come and patch it all up. 2 nurse visits in one day!

That’s enough grizzling for today. Now that I’ve depressed you all with my complaining…

Gratitude

aspendale 3aI had a wonderful day with my sisters yesterday doing arty crafty things. They came to ‘The Wood Hood’  (arriving at the same time as the nurse) and plonked on the kitchen table for 4-5 hours. We ate lunch amongst our mess and chatted non-stop, as you can only imagine 4 sisters can do. The MOTH flew the coup very quickly and came home just in time for my ‘leaking wound’ experience and the arrival of the second nurse for the day.

I’m so grateful to have such wonderful baby sisters who make me laugh and inspire me so much. I always wanted a brother but seriously, would he want to sit and do craft or art while eating diet food and barely leaving a silence in the conversation for 5 hours straight? Could anyone ramble mindlessly like us and understand what is going on? No. I doubt it.

Medical info

I have appointments with the plastic surgeon and breast clinic this week but on the 30th of Sep I discover my plight with the chemo and radiotherapy. I don’t have any preferences. If I don’t have any more treatment it could leave the cancer cells ‘untreated’. If I do… well of course, that’s no fun. With my type of breast cancer it’s important to make sure all cells have been killed off. So even though I’ve had a mastectomy, there are potential cells lingering either in the blood, or on site. I’ll be guided by the experts so prayer and smart doctors are the order of the week. As the breast nurse said to Col this week ‘We’re not out of the woods yet’. Given our name I don’t think it was a pun.

I’m so glad I’ve had the 6 months chemo to shrink the tumour and to stop the spread into other parts of the body. Otherwise I’d be sitting here like a time bomb waiting for the surgery to heal. Well… perhaps that’s a bit dramatic but it does feel like it sometimes.

In December I have a bone scan and a PET scan to check if there is any cancer into other body parts. The doctors don’t believe it is so, but it’s a good ‘peace of mind’. How wonderful to live in times where these tests are available. It takes the guess work out of things.

In the meantime… I’ll macrame my drainage tubes and do a happy dance when they are gone. The small things make me happy! They also make me grumble.

It’s just a flesh wound

My guest blogger seems to have upstaged me so I’m taking over again! Thanks Sophie for your lovely contribution I love you heaps.

Today is ‘verdict day’ so it’s an odd day to update the blog but it’s a good time to share my past week and clear my mind in doing so.

T10636229_10152421456294506_7077982170405306639_nhis beast of a cancer is determined to make a fashion model out of me. Now that I am hairless, one breasted and having to carry two drainage tubes around in a floral bag the picture is perfect.  I had a few additions in hospital such as the long white socks and the bandage over the cannula. Apparently it’s all for the good.

If I could be so vain as to say my best attributes have gone, I would say it but perhaps it’s that my vices have been stripped from me and that can be a good thing. It forces me to live life for the right reasons. Besides, who needs a breast when it’s trying to kill you? Who needs hair when you have to keep washing it and cutting it. Apparently it will grow back. I already have stumpy little eye lashes and eyebrows growing.

images-1The surgery wasn’t so bad. I took panadol and off I went, showering myself the morning after surgery and feeling pretty good overall. My underarm is giving me the most grief as it has a strange crater in it. I seem to have a lot of weird sensations, including pain, under there but I guess it will subside.  I also have numbness, intermittent coldness and a feeling that a mouse is running up the inside of my arm. Maybe I should remove the cheese from my armpit (mouse… cheese… never mind).

I’m so pleased that I kept up my exercise as I am still feeling so very fit and have very little fatigue. I can’t do any for 4 weeks now so that’s disappointing but at least I have a good starting point.

They put 100 ml of saline into the expander, which isn’t anything to write home about but in 2 weeks time they will add more and keep doing that until I am ‘balanced’.  Sorry… no photos. I draw the line there and I’m sure you’re pleased about that. Sophie couldn’t wait to see the war zone but not everyone has her warped curiosity.

I had a huge room of my own in the hospital for 5 nights and the nurses were calling me the queen. Given that my arm exercises include a ‘Queen like wave’ I showed them just how right they were. Although they were all lovely and I was very well treated (apart from the food!!!) I am very happy to be at home. There’s no place like home.

I would have been home after 2 days but the drainage from the wounds was (and still is) flowing a little too much. Hopefully the drainage tubes will come out soon as I am not fond of dragging them around with me. Yesterday was my dear MOTH’s birthday and after waiting all day for the district nurse to arrive we went to the movies and out to dinner. I had my drainage tubes in a bag under my coat, my wig and makeup back on and off we went. A tiring but fun day to celebrate  his birthday and the ignorance which could be called bliss. Today is ‘verdict day’.

 Verdict day

The surgeons and doctors had a forum to discuss my ‘special case’ yesterday. They have told me on a regular basis that I am ‘unusual’. Given that the 1st tumour shrunk with the first chemo (Paclitaxol ) but the 2nd tumour grew on it. If, in fact, it WAS a tumour. Both tumours grew on the 2nd chemo (AC). I’ve no idea when the lymph glands became malignant or how many (yet). I don’t know if there is any spread or if I need more chemo and radiotherapy. Surely 6 months of chemo is enough but if it’s necessary I’ll be guided by them. I’ve no idea how they will decide which type of chemo to give me.

So today is the day the doctors will decide how to continue with treatment, given the limited options of Triple Negative Breast cancer and this will be discussed with Colin and I this afternoon. I don’t know if I should hope for chemo and radiotherapy or not. Part of me just wants to get on with my life and the other part says ‘give me what I need to get rid of this thing’. I have faith in the surgeons, although mine is away this week so I will see a registrar.

Watch this space…

Last but not least

A big thank you to everyone for your prayers, well wishes, cards, flowers etc. We both feel really blessed to have such wonderful friends and family surrounding us with love and support. I know I haven’t personally thanked people for the cards etc but I really have appreciated your sentiments. It boosts me no end. I personally want to give a big hug to the MOTH and my 3 kids for being such troupers. Shan has been in NY but has been phoning and messaging me daily. I can’t wait to see him!

 

Goodbye Lefty – written by Sophie

So a few days ago Mum was telling me that her close friend gave her left breast a little wave goodbye before surgery. Mum proceeded with “Do you have anything to say to my left breast Sophie?” I responded, “I have NOTHING to say to it” and with that I gave her left breast the silent treatment and went on my merry way.

Yesterday was surgery day. The operation took about 5 hours. For those who don’t know, they also took her left arm’s lymph nodes out as there was cancer present. Still unsure if second lump was cancer (presuming it was), will find out in a weeks time from pathology. The cut (scar) appears neat and Jenny said that they were pedantic about making the right measurements and a neat incision. There were no complications which was fantastic. An expander has been put in temporarily. Further cancer treatment is yet to be decided as apparently she’s a rare case and the doctors are putting all their heads together on this one! Jenny has a drainage tube from her left side. She has to carry the tubes around in a tote bag, one the nurses gave her  (What the?).

Jenny was in high spirits today, the grogginess has warn off and she said she’s “eaten like a horse”. She is already doing her arm exercises the physio gave her, like a pro! As she has no lymph nodes on one side she will need to be extra careful of her arm in numerous ways, for the rest of her life time. Jenny will hopefully be home within the next few days.

Our family is overwhelmed with the support we’ve been given and I can speak for us all in saying we are proud to be part of her life. I know this journey has made me want to strive to be more like my Mum as her strength and positivity is truly inspirational. “Kick cancer’s butt!”

Love Sophie

P.s I apologize If I haven’t gotten back to people as I work full time, but feel free to message my FB if you require more information!

 

A tough decision… but who needs breasts?

556963777To follow on from last weeks post… I have more news but it’s still filled with ‘ifs and maybes’. That uncertainty which I know and hate.

To help with uncertainty I’ve made a decision for myself. After a long hard think about it and discussions with the family… I’ve decided to have a mastectomy (left breast) next Wednesday regardless of the ‘new lump’ cancer status. That was a pretty hard decision to make but once I made it I felt relieved. Who wants to live the rest of their life with lumpy boobs and potential tumours that grow with the speed of light? I’ve had up to 15 cysts in each breast from the age of 17 which makes self-lump detection impossible. The breast screen didn’t pick up the tumour last October and it grew rapidly over 3 months to golf ball size. How could I ever relax?

The ‘new’ lump is growing dramatically and feels very much like the ‘old’ one. Hard, irregular, immobile and sore. The old tumour is also growing. There is a race going on and I feel like a lump factory! The surgeon is pretty certain that the new lump is malignant and she would be doing a mastectomy anyhow if that’s the case.

Here are the bullet points again:

  • I will have a full reconstruction during the surgery providing the tumours aren’t bigger than 5cm and haven’t spread into the chest wall. If this is the case, I will need radiotherapy and they will put a balloon (!) in there to hold the space and the reconstruction will be done after treatment finishes. Colin said he is going to chase me around with a pin.
  • I probably won’t have my current chemo again but may need to go back on the old one (TBC)
  • I may need all of the lymph nodes removed because they look ‘suspicious’ but they will test them while I’m under anaesthetic and decide then
  • Surgery is next Wednesday the 10th of Sep but I have no notification yet so I don’t know times. I’m not even really certain which hospital I will be in
  • I need to see a plastic surgeon but I have no notification yet so I don’t know times (!)
  • It’s all being done in such a rush the doctors are in a spin. They had a meeting yesterday to discuss my situation which they said is very complex. Well yeah… I am not a simple person. Even my breasts are complicated ha ha.
  • I don’t have to have the core biopsies tomorrow. YAY!!!!!! I have a very busy weekend so I can party on.

I feel peaceful and happy with my decision. Many of my friends have offered to donate their breasts as they feel they are too well endowed. I have such generous friends. I wonder what they would do if I said ‘yes please’ with a serious face. I may take all donations and make a collage out of them. Ew!!

I don’t know how they will do the reconstruction but I’ll find out soon. I hope they collect bits of fat from hips, thighs and buttocks. The balloon sounds interesting but I’m worried about what colour it is. You know how important that is to me.

Arty news

Luther College artist in residence project. 'Noahs ark'

Luther College artist in residence project. ‘Noahs ark’

Last week I was approached by a book publisher to illustrate a children’s book. I’ve now signed the contract so that means I’d better do it!!

I’ve got my Artist in Residence position at Luther College with my artwork to complete, classes to teach and I have several commissioned jobs waiting to be done.

Like so often in life, a door closed and another one has opened. I think I’m officially an artist. Wow that sounds weird. I don’t even think my art is good but I enjoy doing it and others seem to like it. I have sold more than 60 pieces of artwork since March this year along with products and prints. I have to pinch myself sometimes. I’m loving the expression and creativity it releases in me without the need for concentration or stress. It’s just as well because concentration really isn’t happening in this little brain lately. At least I have a break from chemo and will be able to construct a sentence without the need for charades when I can’t find the words.

I’ve been sharing my story with the kids at Luther College and how getting cancer has opened a whole new world for me and that with bad things there is always good if you look for them. To prove it, I’ve told them how I can draw my eyebrows on differently every day and wear different wigs. They give me that ‘gee you’re a weird person’ look that teenagers do.

I’ve had so many opportunities and wonderful experiences as a result of spending time on my art that I can only see it as a blessing. I am SO not returning to my previous work. I now declare that my geek days are over:)

If I get more details about my surgery I’ll post them before next week, especially if I find out the balloon colour as I know you’re all dying to know.

Purple would be nice yes?