breast

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;)

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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

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!

 

Chirping quietly

Screenshot 6:09:2014 6:11 pm

I’m back on my perch and chirping. I have to admit though I’m almost ready to fall in a heap. It helped a lot that the plastic surgeon gave me clear answers yesterday and I have fixed appointment times. I’ve had so many changes to the surgery situation because it is so rushed, that my head is spinning. Plus… my week is like this…

Friday: am Luther College pm Drove to the Austin hospital with Sophie to speak to plastic surgeon

Friday night: Dinner with friends and an over night stay at Heritage estate

Saturday: Breakfast at Heritage estate, drove to Frankston and back with Sophie, ran laps around the athletics track

Saturday night: Out for tea

Sunday: Surprise event for Colin with the whole family starting with an early morning (TBA)

Sunday night: Movies with my friend

Monday am: Pre-admissions appointment at Maroondah hospital.  pm: Breast nurse appt

Tuesday: AM Breast clinic  PMLymphoscintigraphy at Maroondah hospital (to check the location of lymph glands)

Wednesday 7am: Maroondah ready for surgery

 

So as you can see… there is no time to have a meltdown and I’ll just have to remain on my perch chirping:)

 

Surgery news

Sophie came with me to speak to the plastic surgeon who spent an hour with us. Sophie took notes which was very helpful and was a great emotional support as well.

Apart from the surgeon telling me I HAVE A BEAUTIFUL TUMMY (and proud) he also told me I didn’t have enough of it to create a breast. Boo to pilates!!!

The appointment was for an hour and so I won’t bore you with the gory details. I’m sure you’ve all heard enough of my breasts over the past 6 months. Here is the rundown, using Sophie’s notes.

  • It’s best to do a reconstruction with your own tissue – because your body will move and grow with you. Doesn’t have the same problems as implants. If you put on weight so do the breasts.
  • May be difficult because I don’t have much ’tissue’ (I’VE ALREADY HAD LOTS OF DONATION OFFERS THANKS!!!!)
  • He will put in tissue expander (purple balloon) to keep space open. This gives a better result in the end as the skin is ready for implant etc.
  • Tissue expander concerns – radiotherapy burns skin, can deform the breast and around the tissue expander which can cause infection.
  • He believes mastectomy is a good idea given my little lump factory situation and the fact chemo isn’t working and I can’t use other treatment options (hormones or Herceptin).
  • Tissue expander, goes in flat under the muscle and then they put more and more saline into the tissue expander port via a needle through the breast every 2-3 weeks (nice to know it’s not helium)
  • During the 3-5 months I will find more about the treatment options.
  • During radiotherapy they may need to deflate the tissue expander (remove the saline).
  • Reconstruction is not a good idea given that my cancer future is unknown. Once I’m clear of cancer it can be done. I need to grow a tummy in the meantime ha ha.
  • Plastic surgeon is at the end of the pecking order. Most important to save life and rid body of cancer.
  • Reconstruction date is dependent on further cancer treatment.

Sorry if it’s a bit of a ramble but I’m about to go out so I haven’t edited it very well. If it makes no sense just be assured I am in good hands and feeling happily overwhelmed!

Sophie will update the blog while I’m in hospital:) Now is her chance to publicly humiliate me ha ha.