jenny wood

Skin check app warning

Yes I know… using a smart phone app to check a mole on your skin sounds like a stupid thing to do but…

A: I’ve been battling breast cancer and it’s hard to focus on the little things when you’re batting a ‘big’ (pardon the pun) thing. So many little medical issues become insignificant and getting MORE tests is so exasperating.

B: My GP recommended I do this as it is a ‘really good way to track them yourself’.

Skincheck apps have become very popular for checking moles etc for malignancy. I have very olive skin but even so I have a lot of moles and have had a lot removed. The MOTH was told by a mole checker recently that he had ‘too many’ to check and yet he is a prime candidate having been burnt so many times as a youth with his fair skin.

When I asked my GP about this mole 12 months ago he said it looked ok and to check it with this app. I was undergoing breast cancer treatment at the time so he was hesitant to put me through more and in hindsight it DID look ok at the time. It looked NOTHING like the melanoma my Dad had so I must admit I wasn’t too concerned. Dad’s was very small and jet black. Mine was like a small Sultana bran flake… but not as yummy.

So when I checked the mole on my arm using the app recently it was classified as ‘low risk’. I checked it twice but only saved one of the photos. Well that gave me peace of mind for a while anyhow. Let’s get this breast reconstruction surgery out of the way.

While waiting to go into surgery to have my breast reconstruction, an enthusiastic student plastic surgeon saw it on my arm and said ‘I don’t like the look of that’. THANK YOU to her diligence because otherwise I would still be floating around with it on my arm.

I received an apology from the company and have told them that I was wanting to warn them and give them feedback so that they can tweak their app. I am sure they have peoples health in their best interest but even so… WARNING WILL ROBINSON don’t rely on them!

Now I have had a failed breast screen check and a failed melanoma check. How cool am I? I just keep bouncing back and ducking and weaving. I’m living life fearlessly in faith with a sprinkle of caution.

Here is their response…

Screenshot 24:03:2016, 8:42 AM.jpeg

 

 

Strange Christmas gifts for me

All I want for Christmas is 3 tattoos and a breast inflation. Apparently that’s what I’m getting.

Yesterday I had an appointment with my new Radiotherapy specialist at Ringwood Private. He was more rapid firing than my Dr at Maroondah but seemed very thorough and in a rush to commence the program. I begin radiotherapy on the 29th of December. I was hoping to have a break and begin late January but at least I will get through the treatment sooner this way and spend some time recovering before we go to Europe in May.

On Christmas Eve I have my last ‘breast inflation’ appointment at Maroondah where Dr Grim (not his real name) will advance on me with the largest syringe on the Earth and inject 75ml into the tissue expander. That will be my last one yay! Later in the day I go to Ringwood Private to have 3 tattoos and a CT scan to prepare for the radiotherapy. I hope the tattoos are something cute. I rather fancy an owl or something. So Christmas Eve will be spent in hospitals and not preparing for Christmas day at my place!! Oops. At least I’ll have tattoos.

While they are there I could get this tattoo on the back of my head. You like? My hair is still falling out so I’m not expecting long locks for Christmas at this stage.

The doctor decided that I need 33 treatments rather than the original 25 as I have had a big gap between surgery and radiotherapy and I am high risk of the cancer spreading to the chest cavity. So that’s every day except weekends for 6 weeks or so. Ho hum. What’s a few more weeks in the scheme of things?

Oncology nurses are angels

I can’t thank the staff in the breast clinic and the oncology nurses at Maroondah enough. Having chemotherapy is frightening for many people but they made something which can be fraught with fear and anxiety, a supportive and caring place to be. They are always concerned and kind but they are also fun and friendly. They go over and above their call of duty and run their little legs off all day supporting people who can be at many stages of grief or anxiety.

I’ve heard many cancer patients find it difficult to move from this supportive environment to ‘being alone’ and I can understand why.  Having had chemo for 8-9 months now they have become a part of the family. The staff walking the journey at your side is really important and stepping away from that can be a little daunting for the patient and their partner.

To top it off, the MOTH has teased the daylights out of them for the past 8 months. Perhaps he will finance their self esteem building sessions.

Feeling unravelled

Screenshot 17:12:2014 8:53 pm

Please don’t ask me what goes on in my brain. Col says my brain scares him. This week I did a series of 4 greyhounds who are looking rather ‘unravelled’. I sold 3 of them before they were finished. I can identify with them in that I am tired, I have various aches and pains but I’m still running towards the finish line. I am not skinny though!!! Stupid breast cancer chemo all has ‘weight gain’ as a side effect. Not to mention all the eating I’ve been doing but let’s blame the chemo.

Actually I think I am less tired but with all the Christmas celebrations I don’t feel it. This morning I actually did some RUNNING on the athletics track. It wasn’t much but enough to start getting my fitness back. Hopefully I’ll be able to get out of bed tomorrow without the resulting sore muscles.

I’ve been asked many times where people can see my artwork. At the risk of seeming self promotional…

Facebook page https://www.facebook.com/jennywoodart

Website http://jennywoodart.com/

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!

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!

 

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?

Falling down with the roller coaster

Things have just taken a bit of a dive bomb this week unfortunately. This is a quick update to fill you in. I’m sorry to those I didn’t contact personally yesterday. As you can imagine, it’s difficult to be on the phone (especially when you have a hearing impairment like me!!!) making individual calls. Just be assured that it’s not that it’s not my preference. I have hundreds of relatives (literally) and that’s without friends. I LOVE YOU ALL xxxx So I hope you’re OK with reading my update here. If not… well… erm… too bad to sad? I’m harsh but you know it’s my humour.

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Last week when I went to have chemo and saw the oncologist she could feel and measure the breast lump. This seemed a little odd given that it hadn’t been ‘felt’ for 2 months by either of us. If it wasn’t for the ultrasound we could have decided it had disappeared.

Over the course of the next week it became sore like it used to be and by Tuesday this week I could grasp it in two fingers. To add to it, I can feel two more sore lumps nearby. So I phoned the clinic expecting the usual ‘it’s just normal don’t worry’. They made an appointment to see the surgeon for the next day (yesterday). I taught year 10 at Luther College as part of my Artist in Residence role in the morning which distracted me very nicely!

The surgeon felt the lump and very quickly said ‘yes it’s growing back’. She thinks one of the other lumps is a cyst but is a bit dubious about the other. I don’t have all the answers… because I forgot to ask the questions but hopefully I can fill in the gaps over the next few days. Here is what I know right now (for those who like bullet points ha ha).

  • The tumour isn’t responding to the current chemo and because it’s a very aggressive cancer type it is growing back as rapidly as it shrunk
  • I MAY stop the chemo (oh please!!!) but I don’t know for sure until the surgeon speaks to my oncologist
  • I will have a biopsy on the 4th of Sept of the other two lumps
  • If the other 2 lumps have cancer cells I will need to have a mastectomy
  • I am booked in for a lumpectomy on the 10th of Sep and if the biopsy is positive they will do a mastectomy instead (with full breast reconstruction at the same time)
  • I will find out if it’s a lumpectomy or a mastectomy on the 8th when the biopsy results are analysed and my doctors have had a meeting about it
  • I will have all lymph nodes removed because some are swollen (need to query this today when I phone them)
  • I need to see a plastic surgeon about the reconstruction at some point but I can’t imagine how that will fit in between the 8th and the 10th
  • I don’t know what this means for the clinical trial. Perhaps I’ll be kicked off it. Not the first time I’ve been kicked out of something.

So that’s about as much as I can tell you right now except that I’m feeling OK and not daunted at all. I’m always happy when there is action. It’s when I get patted on the head and told not to worry that I worry.

In reflection

You may feel (like many do) that perhaps I should have had it removed in the first place. This is a total fallacy, especially for my type of breast cancer (triple negative breast cancer) and given that it is so aggressive. Remembering that I had a CLEAR breast scan in October 2013 and 3 months later I had a golf ball sized cancer growth. If I had had it removed prior to chemo, I would have had chemo delayed for a couple of months while I recovered. In the meantime, any floating cancer cells in my system could have established themselves in my body. Once that happens it is incurable (with breast cancer, secondary cancer can’t be cured). AINT NOBODY GOT TIME FOR DAT!!!! Chemo killed all those little suckers and now I’m just left with the tumour to deal with.

But now… let’s get that sucker outta there!!!

I’ll update you when I get the next saga of news so watch this space. As always I appreciate your prayers and interest very much.