Its not Black Friday

So it wasn't even Friday the 13th, but Friday the 16th, I wasnt even having a good time with champagne in hand.

Just when I had restarted my exercise program and was looking forward to regaining my fitness and health as I am healing, and this happens. A hungry cat cutting me off as I spilled the cups that I was carrying, wetting the floor and in my half running pose, slipped over backwards hitting my head on the stool and slamming onto the wooden floor with my coccyx and my newly healing lower back! Ouch!!!

A call to Nurse on call, ended up with an ambulance administering pain killers and taking me off to emergency at St Vincents Hospital. There I stayed until things settled down and it was clear I didn't break my back. Home at 2:30 am with a sorry looking cat on my bed and my 10 year old girl eager to see me walking again.

I still cant believe it happened really. So I'm off for xrays to see if anything had been done in the process as I'm still hurting. Then it will be off to a physio instead of a personal trainer!

So just in time for Christmas, and I think I'm ready for the New Year now. Bring on 2017. I thought 2016 was going to be a better year - I guess it was in the cancer department. Just dealing with the after-effects from all of the 'procedures', drugs and coping with my new body which is a new weird shape from my backside, hips to my chest. Let's just say dressing takes me a little bit longer and it will be a while until I can wear a dress again - if ever.

I finished work for the year yesterday with some relief really. Even though it is a bit easier going to work than facing the maintenance of the house, getting ready and sorting out the kids in the morning adds to the stress.

Looking forward to spending some downtime with the kids and not thinking about things too much and a quick trip to Torquay in January before the work/school year starts again.

At least this Christmas I am not visiting radiotherapy at the Austin everyday and have managed to drop all of the extra fluid I had onboard then, thinking that it would never go away.

Merry Christmas to all my lovely friends and family, I hope you have a wonderful time with love and sparkle over the festive season. Hug your loved ones close and be thankful for each of them.

Remembering our trip

Gosh, it seems so long ago we were in the US. While I was in hospital I used the memories of our trip to keep me going. Thinking happy thoughts.

Anyway, Ive got some of my favourite photos to reflect on, John took 4000 of them. I'm sure there's a lot more, but here is a small collection.

Putting myself back together

I expected this to all be finished by now :( It's so frustrating and slow this recovery. I'm concentrating on putting myself back together again, I know I will never be the same again both physically and mentally. Still living with the fear and sad when realising I'll never have my body back the way it was, not that it was any "elle Macpherson" body but still it was mine, all the flabby bits and all. I feel a little Frankenstein-ish when see myself in the mirror with slashes like I'm the main actor in some kind of gory horror movie. The weird shapes are hard to get used to also. But I need to be patient to get it back together.

So the body, the mind, my hair and my toenails are all on the mend. And then there's Tamoxifen. Just when I got used to the stuff, I've got the lovely bone pain (which makes you fear the worst), hot flushes and tiredness - all that I had got over when taking it before. (I had to stop it before surgery and have only just started taking it again).

I will never feel under my arms again, making it dangerous to shave under there. Its interesting when you spray your deodarant in the morning, the door behind me must be covered in deodarant - I can never find my armpit. I'll have to revert to roll on - less mess.

Decided go bra shopping as well, well not a bra but something that could hold my bandages in. One benefit, I dont really need to wear one of those anymore if I dont want to, but with the natural tissue they can still sag. But 1 is a B cup and the other is a large C or a D - my clothes hang in a very interesting way.

I saw the big moon the other night - I feel like I have to part of anything that's happening and make the effort rather than miss out and fully participate in life's these days.

I have also started a journal with all the things I'm grateful of each day - hmmmm...turns out I have a lot more than I thought I did.

I'm grateful for the beautiful flowers and chocolates I received from Leanne, book club and work. Also, Susie brought around her most excellent meatballs - yum. The girls, Carolyn Jill brought me magazines and chocolate for while in hospital and coffee and muffins when back at home, yummy Haigh chocolates from work (I managed to eat them all myself, but had to hide them to do so).

Then of course the gift of my Mum, thanks Dad for lending her to us. The cooking and washing were taken care of while I recovered. Mum and I had a lobster for lunch on Oak's day. So with drain in hand, I decorated the table, the weather was beautiful. It was fun in our own kind of way.

Thanks for all of your support of me, I am very lucky.

Anniversaries to forget

Today was my anniversary of my last chemotherapy 1 year ago. I so looked forward to the 20 November 2015 like no other date in my wee life. As I fight to keep the fear buried within, I hope I never have to go through that shitty experience again, or for anyone else for that matter. I know some people fly through it with hardly any symptoms but I don't know how or why? Probably different chemo drugs I guess.

This week I was asked to go to the a Think Pink Living Centre to support them for a media release. I couldn't not go after all the free services I have taken advantage of. Except when I got there they asked me to speak to the media. Luckily I had written a blurb for their media release but I wasn't expecting to read it. Anyway, with knees knocking and a good deal of reading from my tiny iPhone screen, I delivered my story. So tonight I saw myself on channel 9 - aagghh. It's difficult to see yourself on TV that's for sure! Anyway I do hope they have more clients utilize their services and they continue to get funding into the future. With charities it's all about how well they are known like the mnd foundation ice bucket challenge.

My beautiful friend, Cora's anniversary of her passing came and went. We were in the middle of San Francisco climbing one of those crazy hills or the Coit Tower steps, not only did I realize just how unfit I was, but thinking about the struggle, she popped into my head. I checked the date and it was her anniversary. Vale Cora.

Another milestone - I had my first haircut - Woohoo!!! So excited to need a haircut. Thankfully he did not take too much off my hair, but mainly shaped it which is exactly what I needed him to do so I could grow it. No more koala bear ears sticking out the side of my head and he cut off the tiny curls. It reminds me of the old perm days in the 40's and 50's where women would perm their hair as tight as they could possibly do it and then have their hair set to make waves. Yep I even did set my hair in curlers to make this work for me.

We also had Andres' reconciliation at school, I asked the kids what they are grateful for, Andres was glad that I didn't have cancer anymore :)

I finally got my drain out too - I said goodbye to my little friend - good riddance little sucker!!! So it was much longer at 4 weeks out from surgerY before removal. Luckily it happened just before I was due at the media release - ooh that would have been a bit gross. This drain was draining my buttock site, so Fingers crossed I don't get a seroma with this side now.

I saw my GP today and it turns out I have the start of an infection on the latest mastectomy and reconstruction site. So on antibiotics to get that sorted - wouldn't it be terrible after going through all of this with my buttock only for it to fail. Leaving me with a butt that looks like it has been through a hail storm with stones the size of cricket balls. My P.S is on holidays so he couldn't check it out. He didnt seem too worried, but an email at 1am on a Sunday morning with photos of oozing ought to tell him that his patient is freaking out, nope.

I'm back at work, but can't quite deliver on a full work day just yet. Came home today incredibly tired and heavy, tucked up in bed now ready to have the conversation with my body that it's time to sleep!!!! Good night all, sweet dreams.

18 Days Post

Day 18 has come and I'm getting better - but not quick enough for me.

I've got things to do and getting frustrated sitting around all of the time. So I've signed up to do a course, and looking forward to fixing this surgery so I look somewhat normal and driving again.

Today I saw the plastic surgeon, I have been a little down about the result of this surgery. My chest feels like I've got some type of tight bandage wrapped around my chest and it's as hard as a rock. One girl likened it to it feeling like an amputated leg stump sitting on your chest - it truly does feel that weird after the softness of your natural self. Not to mention the lack of symmetry and puckering and that it feels like the tissue is bulging and about to spread into my neck region. Then there's the issue of my back flap. Something I never considered prior to taking the 2 glute flaps for the implant, where the 2 scars cross there is a puffy section that looks and feels weird in my clothes. Anyway hurrah, it's all fixable and he says with very minor surgeries. To quote him '60 seconds to fix the back flap problem'. The question is how many more? The reason I chose this method was to reduce the amount of surgeries in the long term (implants need to be changed every 10-15 years). Anyway, I'll see what he has to say to that question.....

A few days after arriving home, I got the most excellent news from my beautiful breast surgeon that there was no cancer in this mastectomy - yay!!!! That was exciting and expected, so glad it all went to plan.

Mum has been here helping me with the kids, cooking and housework - she is my guardian angel - thanks Mum. John has been ferrying the kids around as well as Heidi backing up with drop offs. It's hard to not do the things I normally do, but doing more as I get my energy back. Grateful for being so supported and loved - thank you :)

Halloween has just been and gone.....I did consider using my drain full of blood as a prop for a costume, very creepy. Since I have to tow it around with me every where I go, it would have been a perfect Dracula prop but it might have scared some kids so I reconsidered. I dressed as Daphne from Scooby Doo and off we went to Heidi's for a creepy dinner and Trick or Treating around their neighbourhood. They have it set up so that you only go to houses with decorations and leave the others alone. At least people can choose to be involved or not. Mind you, I just sat in the house, while the fathers took the kids around the neighbourhood :) The kids had a ball and it was good to have an 'outing' outside of these 4 walls within some other 4 walls.

I must say I'm going a little bit crazy stuck here. At least I have started my Christmas shopping.

Familial Cancer

I received a letter from Peter McCallum Cancer Centre.

My Breast Surgeon had put me forward for testing for the BRCA gene to see if somehow I may have inherited a mutation. If this was the case, then Jana would also be at risk of breast cancer in her future.

It turns out that I am a low risk, so this is just an unfortunate freak of nature. If you are high risk, they do the testing and counselling at no charge (I think), I can ask to still have the test done for about $3,000.

My oncology gyno suggested that there are so many new advancements in development for testing for breast cancer that she suggested that I hold off. By the time it will most matter for Jana, there should be a simple blood or saliva test for it. Wouldn't that be great and such an easier way to be tested.

However, so I possibly don't have the gene mutation, just dumb luck. But for my sister, my mother and my daughter - they now have a moderately high risk because of me....so they need to be tested regularly and for longer than the average Jane. It also mentions considering hormone receptor blocking medication for daughters, which sounds a bit drastic. So hopefully the simple testing comes into play in the next 5 or so years taking the worry away for Jana.

I'm still to consider the hysterectomy or ovary ectomy (forget the name of it)....but I've got to get through this surgery recovery first.

12 days post surgery

Some lovely gifts from my little family that warm my heart.

Well I've survived the first 12 days. I came home with 1 drain left in my hip that I need to attend to every second day. I am a skilled drain changer now. I keep forgetting that I have Dewey attached to my hip as before - especially waking up in the middle of the night needing to go to the toilet only to be yanked back by the stitches where Dewey lies in waiting twisted up under the blankets somewhere.....OUCH!

I also have to inject myself with anti-clotting medicine every morning - the joys of it all. Luckily Mum is much braver than me. I did it once in hospital, but I couldn't bring myself to actually puncture my stomach with the thing - it took forever, but I did manage to do it at least once :( I cant even watch other people doing it to me.

I had my first visit to the plastic surgeon. The nurse just changed my dressings and sent me on my way. The drain is still draining way too much to give it up yet. My plastic surgeon saw me in the reception area and came up and gave me a 'sideways' hug. Asked how I was doing. He was a bit concerned that I had a super high expectation with this other side, as the first one was such a good job first off. I wouldn't know really, it doesn't feel like me, or look like me. And if I was honest and wanted to be a bit picky, it probably doesn't follow the lines of a natural one just yet. He was pleased that I was starting to get picky. At first I just wanted the cancer out, then I just wanted lumps under my clothes but now I have progressed enough mentally, that now I am fussy. Prior to surgery, he had me lying down while he pulled out his tape measure and texta. While he drew all over me, he did it all again - "measure twice, cut once" he murmured to himself. Well that was reassuring, and I think he may have got my butt even. Stay tuned to see if I don't have a permanent one sided wedgy and I'll know for sure - that will be my measure to see how good he was.

So now I have an 'asian bum' as my asian oncology radiologist put it. Only he is allowed to say that.

Otherwise, I'm managing the pain mostly. Sometimes, I do hit a wall if somehow my painkillers don't align and there's too large a gap between them. So last night, I took the evil pill that dopes me out - I got lots of sleep and then some. Today I fell asleep watching TV without even trying. Tonight I might try half a tablet to see if it wears off a bit quicker for me to start my day.

Next milestone is getting the drain out and then I can wear my normal clothes rather than trying to fit th drain in what I can.

Then its confronting the final result and discussing what needs to be done to fix it. My 'new accessory' certainly doesn't look right, I cant feel it anymore which was expected. Then there's the x over cross on my butt which has a puffy pocket below it which needs to be sorted, unless it goes down by itself. So hopefully only 1 more day surgery after that and then I'm done.....here's hoping anyway.

Discharge day is here

Tuesday

So I think I have a day for discharge being this Thursday. Feeling a little nervous about it.

I've been having needles 3 times a day - heparin. It's supposed to stop blood clots. they are painful until - a lovely nurse called Jennifer held my leg and didn't let go straight away. I didn't get the bee sting feeling I usually do with her administering it. No pain at all - it goes to show that it's the level of care from the nurses that makes the difference.

The food isn't great - today at lunch I snuck down to the coffee shop for some sushi rolls. It was a party in my mouth with so much of the food devoid of flavour here.

I have started to think about things again and the reason that I'm here has raised its' ugly head again. It's always lurking in the depths of me somewhere and then different triggers bring it forward again. You also inadvertently hear the sad stories around here and that feeling of terror of learning the diagnosis - it all that comes back to me.

But I have to stay positive and let the body heal, taking each milestone at a time. Look forward to my positive future rather than 'what if' scenarios that may never happen. And trust that I have gone through this to prevent recurrence. I probably need to do more in my life to reduce my recurrence risk as well.

I've finally worked out my painkiller intolerance. Oxytocin via a drip causes nausea and dizziness, voltaren I seem to tolerate, panadol is ok, taigin is okay but causes some drowsiness and constipation, they gave me dexomethosone to sort out my dizziness so that improved. Everyone has sent beautiful wishes on Facebook which make me cry when I read them.

Wednesday
Last night my babies and John came up to visit me. Andrés kept cuddling and kissing me, then started crying when he was leaving. I just wanted to cuddle him and keep him with me :( he was sad that he also forgot a drawing he did for me. John was going to scan it and send it through to me.

This morning, my plastic surgeon came in and gave me great news that the heparin injections 3/per day are stopping, and some not so good news, I'm going to a new one per day except I have to inject it myself once per day for 2 weeks!!!! Be careful what you wish for people!!!! There I was complaining.

He says it might be overkill, but he's being cautious as the vein he is used is much bigger than the other one and he needs the blood to be thin to prevent any problems. I wonder if it's contributing to my light headedness. Possibly going home tomorrow, with 1 drain left to take home. So hopefully the second last drain will come out today with no consequence and all will go to plan tomorrow and I get to sleep in my bed tomorrow night.

Sunday 16th October

Today is day 3 since surgery.

Surgery was 8 hours in duration until 5pm when I came out of theatre. I think Damien came and spoke to me, I remember him standing in front of me but nothing of what he said.

The first night was the usual hell. Hot and sweaty, nauseous but no pain. I felt caustraphobic in my bed surrounded by pillows with my arm supported at a right angle. Different from last time, when it was strapped to my side. My legs strapped to the bed and wrapped up in TED stockings and a dressing that was being pumped, I had a catheter, a drip, oxygen tube over my face and 3 drains coming out of my side. High anxiety worrying about everything. Could not get comfortable. I had that claustrophobic feeling where I just wanted to rip everything out and go home. Thank God that is over with.

Today I had a shower, had tubes removed and got dressed out of my hospital gown. I feel so much better and able to deal with the pain levels in a better state of mind. Just have to take it slowly.

I've worked out what drugs send me mental, what I can tolerate, what makes me sick.

Face Timed with the kids which was nice to see them. They'll probably come up on Tuesday night.

The PS is happy with his work so far, it's always hard to look at it until it starts to take shape. It's all battered and bruised and quite unrecognizable as belonging to my body for now. It feels like it's up to my neck as well - I hope that drops down in good Time.

Needles in my nipple

Needles in the nipple

Some times I think I really am strong, and then I have a radio active dye injected into my nipple via 4 needles. Fun huh!!!

The reason for it is if ever I did develop cancer in this breast skin at a later stage, without mammary vessels, the doctors don't know which lymph nodes would be impacted and would have to take all of them out. Lymph nodes feed each other sequentially, so the radioactive dye was for 2 purposes 1. Work out which was the first sentinel node, the second and so on, secondly whether any of the nodes were suspicious. When in surgery my breast surgeon would add more dye which make the nodes glow bright blue if there is cancer cells.

If ever I think I'm going through something a little tough or uncomfortable I just have to remind myself of this day.

Tomorrow is the big day, where I go back for the other side to be removed and rebuilt. I think I'm ready but scared out of my shorts. Thinking happy thoughts.

Trip of a lifetime

We are now back after a very memorable holiday with the family.

The kids each have different highlights. I know one of mine was the first photo of the sunrise as we reached California, marking the beginning of our holiday and putting behind the year that was.



My highlights were:
- shopping in Las Vegas
- Titanic exhibition at the Luxor casino, Las Vegas
- the spectacle of Las Vegas
- showing the kids New York, turtle pond in Central Park, the look on Andres face at the museum of natural history dinosaur floor, the look on Jana's face at The American Girl shop
- Disneyworld - hanging at the resort, Magic Kingdom mic key's boo to you Halloween party and trick or treating, Epcot's Soaring ride and aquarium
- Hollywood studios,
- universal studios Harry Potter, using the hermiones wand around Diagonal Alley
- Kennedy space centre
- loved San Francisco, wished we'd stayed there longer, loved our apartment in Nob Hill, The Wharf precinct, cable car ride,



Now we are back to reality, me with the flu and visiting specialists to finalise the surgery on the 14th October.

My seroma on my butt behaved on the holiday and wasnt any trouble. I only started to feel it wobble toward the end of each day. My Plastic Surgeon thinks it has reduced in size, but my physio doesnt think so. She has probably worked with it more than my P.S anyway. He just doesnt want to go back to surgery to fix it and hopes that I will just put up with it. I told him I'd decide after the left side is completed.

My visit to the plastic surgeon meant he squeezed my remaining butt to guestimate a size for filling the breast after mastectomy. He asked if I wanted to keep my remaining nipple, it would mean another surgery prior to next Friday to try and save and re-direct the nerve endings and blood vessels to reduce the chance of it dying once the mammary tissue is removed. I figure it's just another chance for a complication for possibly little sensation left anyway. So just take it away and we'll reconstruct them later. At least they will look the same as each other. So we are all set. He mentioned that he might have to take a vein from my arm, but wont know until he's in there. He thinks it will be 6-8 hours and reminded me of why he has nightmares about this operation - nice!

We talked a little about how I would choose the colour of my nipples - ha, ha, he made it sound like a shopping experience. Using a medical tattooist means the ink only lasts a couple of years and needs touch ups. Otherwise you use a commercial tattooist who uses the commercial ink which is not really recommended on a body part that has had cancer cells. I thought I could have a 3D tattoo that some commercial tattoo parlours are doing with their artist skills, but then I read about the risks of cancer due to the ink and that is why I'm now re-thinking the nipple reconstruction with the medical tattooed aeola. That's why it fades as it is not as permanent, and I'd be left with nothing, but if there's a nipple constructed, I'd feel a little bit more normal if I catch myself in the mirror.

I also saw my Breast Surgeon. She will be performing a procedure the day before by injecting radioactive dye into me. My blood will turn blue and my skin will look ashen. This will be used during her part of the mastectomy by using the mammary tissue it will tell her which order the lymph nodes go in and she will remove at least 1 node if not 4 nodes. If they turn bright blue they have cancer cells. Although she is expecting that there will be no cancer cells based on my complete pathological response that I got from treatment. Even still, the breast contents will be sent to pathology for testing and I should know the results by Monday/Tuesday the following week. So crossing fingers and toes that it's all clear.

A visit with the Oncology Gyno was in order to help me out with the menopause symptoms that are making my life as a woman somewhat challenging. Her answer was some eostrogen cream. Now why would I want to put estrogen back in my body when we've spent so much time trying to remove it?? This is a good question. My cancer was estrogen positive, meaning that it feeds off the estrogen hormone. I am taking Tamoxifen to block the estrogen receptors in my body. Apparently this cream is only enough to improve the bladder and womanly bits from drying out but the Tamoxifen will do its' job so the cancer doesnt start up again. It sounds risky but improves lifestyle. I figure I'll try it out for a bit at least.

So now the countdown to Surgery day - can say I'm a little nervous about it.

Life has been 'normal'

19 August 2016

I haven't had much to write about this cancer journey lately - how refreshing is that!!

I saw my oncologist yesterday. We discussed my reaction to zoladex and the hives 24 hours later and possibly linked to peanuts. Yep and the reaction from her was predictable 'I've never heard of that before'.....as usual. The worst part of that statement is that you feel like a freak! Or they think you are making it up and it's not true! She suggested I see an oncology gyno to sort out the menopause rubbish. So I've booked in the week we get back from the U.S.

My physio is still a regular appointment but at least fortnightly instead of weekly. I seem to bring a new shoulder/arm problem to her each time resulting in new exercises added to my routine. She gave me my lovely arm sleeve and hand sleeve for the flights. I also have to be careful with scrapes or sores on that arm so have been monitoring it regularly for cuts etc. I'm even supposed to not let the manicurist cut my finger nail cuticles in case it causes lymphedema. I just have to tell Andres to stop pumping my arm whenever he comes in for a cuddle. :)

The sweetness of our once cancelled holiday excitement is starting to kick in. I have started getting clothes out and suitcases. All of our last minute planning will happen over the next few weeks.

More surgery

It's been a busy couple of weeks, with travel plans, big changes at work, an emotional roller coaster and medical appointments. 1 minute I'm terrified it's gone to my bladder, the next I'm relieved and think I can live normally again without fear, then the menopause symptoms come and differentiating them from normal side effects - aaarrrggh. At least my GP is my 1 constant, but sometimes you feel like you have too many specialists all with disparate interests - like you aren't a whole but broken into different parts. There are some attempts to bring it all together - perhaps the Olivia Newton John cancer centre achieves it best, but I only had radiotherapy there. Maybe it would be different if I had all my treatment there.

If my plastic surgeon had his way, I would now be recovering from surgery with a drain or two hanging out of my hip. After visiting my plastic surgeon, he took one look at my seroma and suggested we start again with it. It seems to be beyond the extracting of fluid so he wants to go back in there, excise the scar which has hardened, clean it all out and put a drain back in there. Overnight surgery and a few weeks recovery. But we have now 5 weeks until we take off for Las Vegas and given that we had to keep draining the seroma every week up until 4 weeks ago, I'm not willing to take the risk.

My GP agrees with me - better the devil that you knoW she said. So I'll be packing my seroma with me to the USA, hoping it doesn't get infected and I don't need a visit to a doctor over there with no travel insurance for my pre-existing conditions of breast cancer. I have since been to a Boob Club meeting, a group of young women recovering from breast cancer. Not to be confused with book club, which alternates every other week of the month. Kids get confused about where I am going but have a giggle when it's boob club time. Anyway they gave me some insurance companies that do insure for breast cancer. I can just imagine the cost but may be worth doing.

As close as our trip away is coming, so is my surgery for the other side in October. My plastic surgeon is also talking about nipple reconstruction - I'm not sure I want another surgery, but given that I'll probably need one with this seroma now, maybe I'll consider it. I'm excited to even myself out - I'm a whole cup size different at least but at the same time sad to lose any feeling there and the loss of the mammaries (memories) of feeding my babies - you got to laugh.

On the upside, when I showed my plastic surgeon the seroma he asked to see his handiwork, the reconstructed breast, cos it always makes him happy! Ha, ha. It was an opportunity for me to ask him about the grainy/lumpy feeling in it anyway. He says it will soften and that it is as a result of the radiation. he did say that there is no corrections to do on it which is not common (I think he is just trying to make me feel better). But he was setting my expectation that he may not be able to replicate it. I still don't have normal movement of my shoulder yet and still have the lovely cord pulling tight under there and it feels like I have a handbag under my arm and it's all baggy. But still seeing a physio and a clinical Pilates instructor to help with that.

I've been playing around with 3d nipple tattoos - temporary ones, like the kids temporary tattoos. I have been hiding them - can you imagine if they get hold of them - they'd have them on their forehead or somewhere totally inappropriate.... Trying to work out if I'll be happy with just a picture of one. It's pretty realistic - I think I could live with it.

In the meantime, I've been cleared of bladder conditions so it comes down to dealing with the menopause symptoms. Whenever I heard women talking about side effects of menopause, I probably wasn't very sympathetic wondering why some hot flushes would be a problem. But that is only one side effect. The stopping of estrogen impacts your whole body, your skin and your womanly parts where even going to the toilet can be painful - who knew? And why wasn't I told by the oncologists? It becomes a whole lifestyle impact - but I'm alive right! I need to do a perspective check regularly. While I am taking an estrogen blocker for 10 years to stop the estrogen eating sucker, I've been given estrogen cream, which is topical to help with the side effects!!!! Apparently it's such a small amount that it won't continue to feed it, but enough to elevate the symptoms??? I am wary so using it sparingly.

33 days to go - yay..

Bloody seroma

It's back! After finally getting to a point of no more draining of the fluid buildup in my donor site, it's bloody back. I don't know why, but it feels like I have a 3rd hip attached to me. Kind of uncomfortable but not painful.

Wearing sports compression shorts, like bike shorts to keep it all together.

I'm not sure how I'll go traveling - I guess it will just have to wait until we get back if it fills up over there.

Heading off to the plastic surgeon tomorrow during work to drain it again. :(

Home from hospital

I'm feeling like the world has lifted from my shoulders.



Home from day surgery - a cystoscopy to investigate a urinary problem which we linked with the blood in catheter at last surgery. I've had 2 and a half weeks of mental aerobics with what might be the cause and after visiting an oncology urologist "just wanted to rule 'you know what' out.

But apart from some evidence from trauma (surgery catheter) my doc said all is normal!!!! With a smiley face drawn next to my Polaroids. Yippee I even have some Polaroids of my healthy bladder - what we do with them I'm not sure? It's not something you could stick on the fridge "hey look everyone - so proud", "I just wanted you to get to know me better - from the inside out!" I guess now with the days of selfies - "here is my bladder selfie!!!" I bet you don't have one of those. At least I didn't Facebook it...some might.

Anyway, now we can continue with confidence when booking our holiday to the U.S. I kept self talking to myself to try and stay positive that it is nothing, but those doubtful thoughts would creep in sometimes if I wasn't careful.

Of course it is difficult not to think the worst after everything. Googling my cystitis symptoms comes up with some scary stuff, especially after breast cancer. Sooo now still wondering what it is? Probably all to do with that Zoladex injection for sure. We are just not friends that drug and I. But at least the hives seem to have settled down. Andres handed me a drumstick ice cream at swimming the other day filled with peanuts. I thought now is as good a time as any - I had my antihistamine in my bag. It was only itchy fingers and swollen lips but I didn't use the antihistamine like last time. So perhaps the drug is slowly dissipating out of my body so my histamine levels aren't on alert so much. Well that's my theory based on a few things that I read.

When I arrived bright and early this morning, the dreaded feeling of my last surgery came flooding back to me. Wondering what I was going to look like when I woke up and what were they going to find with the pathology result. My double file was sitting on my bed - gosh it was as thick as 2 family photo albums. That's a first, they must have went digging for some dirt on me and came up with this folder with 3 Caesarean sections. My new surgery file from March was just as thick. It was killing me sitting in front of me and not being able to read it. I wonder what the comments might be - 'difficult patient', 'hypochondriac', "she asked for a room with a view - we aren't the bloody Hilton lady", "too many visitors - sounds like a party in there without the Greek dancing".

I only say that because of what I write in my own clients' comments at work - I even have less than complimentary tags for some dodgy leads who are mostly competitors faking interest to get a log in trial to our system. In some ways it's like a sport for me, investigating and flushing them out of the genuine leads I get. I should have been a cop - uncovering B.S.

So while I am home relaxing after my 'little sleep' this morning, I may as well finish booking and researching our trip with more vigour. Happy Tuesday everyone, there's a 12 year old party to organize :)

Here we go.....

Tamoxifen - an estrogen hormone blocker!



Designed to stop any recurrence of cancer in my body as my cancer was estrogen fed. I have been staring at this bottle for a few weeks wondering what side effects it's going to bring me. Hmmmm...tomorrow is as good as any day I guess.

School holidays have been a time of juggling work and the kids and their social events. It has been pretty quiet due to our planning for the U.S.

We took in a movie, Finding Dora and a morning at Latitude trampolining and wall climbing. The weather in Melbourne has been awful so mostly indoor activities.

My baby boy turned 12! What a fast 12 years and a reminder of how old I am :( The family came over and indulged him with gifts and singing happy birthday. I made a cake which I got lost in doing on the day. Cutting it fine I know. He wants some mates together in the next couple of weeks so will sort that out soon.

But everyday is a blessing and even while today was hurricane winds there was a blue sky and sunshine for me to enjoy some mindfulness. Sometimes john and I talk about winning the lotto to buy ourselves a beloved Victorian/Federation home in the Eastern suburbs of Melbourne, but we don't have a spare 5 or 6 million that they are now being sold for. But it is a good opportunity to ground ourselves and remind ourselves that we got better than the Lotto, we found this shitty disease EARLY!!!

To the Happiest place on earth

Its done!!!! - we leave sunny Melbourne at 9am on Monday 5th September 2016 and leave all of our trouble behind.

Im finally going to get myself some Mickey Mouse ears or a Minnie Mouse stuffed toy that I was so envious that my friend Nicki Pearson had and I was always in awe.

60 something sleeps to go. :)

More crazy itchy fun

There we were enjoying a lovely dinner with some girlfriends, eating from several small plates, a nice glass of bubbly and some wine.

The night was great fun and we had some giggles over some crazy sweet/sour dessert which stopped conversation dead in its tracks, not to mention the cat-bum looks on our faces. I joked that they have hidden cameras and are all out the back wetting themselves with laughter watching their guests eat this complimentary after dinner treats!

Anyway as we are walking to the car I begin scratching and itching all over! Here we go again. This time it was all over my legs, arms and stomach. I came up in hives and couldn't stop scratching. Luckily I had some antihistamine in the car from my last episode and took one without water in desperation.

It eventually stopped itching but the hives stayed with me for the night but were all gone by morning. Definitely no more Zolidex for me!! I have a suspicion it has raised my immune system to the point of a new sensitivity. It could be peanuts, but I have to test it.....with my antihistamine safely nearby. Oh what fun....maybe on a weekend when I have nothing better to do.

I went and saw an oncology gynocologist. She was lovely and what a difference talking with someone who knows her stuff. She said she could say 99% that she would not need to operate abdominally and that it would be keyhole surgery with a 1% chance it could change at the last minute. She also told me the side effects of ovary removal and their important function as we age. She has recommended that I go for menopause counselling before making a decision at the menopause clinic at the royal women's. She also told me to go on my holiday and don't make a decision until after that. To take the tamoxifen for 6 months and then decide. She asked why they were pushing the aromatas inhibitor. She was very reassuring, warm and supportive. Overall a good experience. You wouldn't want to be a prude in her office though. She has very large pictures of the female anatomy all over her office. Sometimes I just didn't know where to look :/

My motivational wall.

finally finished coloring one surgery with just outline of the remaining surgery to go. Each coloured represents a part of my 'journey' (we hate that word).

15th June - super kids

Sitting next to my baby boy listening to his soft snores makes me feel like the luckiest mum in the world. Being able to be here next to him and breathe in his baby smell and his warmth is one of the best things about being a Mum. I know he's not a baby but he is our 'baby' of the family.





The last post I put on Facebook I got some comments about needing a superwoman cloak, but I think that my three kids deserve little superhero kid capes for going through what they did to see their mum sick and wonder if I'll get through when we couldn't make them any promises. They toughed it out as did John, my family and friends. I know many were being brave for me.

So what's been happening! I took myself off to my gyno - he was finding it difficult to understand why I needed to take my ovaries out. I tried to explain it all to him. Anyway he's worried it's an unnecessary operation, but oncology want my body to stop producing estrogen. Anyway what I thought might be day surgery, and key hole surgery and at worst an overnight stay and a few days off work - he warns me that it may not be that simple! After 3 c-sections and an abdominal repair he doesn't know until he gets in there whether he'll have clear access to them. It could be abdominal surgery with up to 6 weeks off work. Damn - is nothing simple or straightforward?

Some good news is my seroma may be gone. No fluid to drain for the first time in 11 weeks!!! I high fived my plastic surgeon. He's such a glory dog. My physio taped up the seroma area trying to encourage the fluid to drain to major lymph nodes, my ps saw it and suggested that she was trying to take the credit for the fluid draining. The main thing is that it has resolved for now anyway. 1 appointment off my list each week.

So now I'm booked in to see an oncology gyno who can perhaps advise me a little better, no more Zoladex implants for me since the allergic reaction, so might delay surgery and use the lesser hormone blocker, tamoxifen for 6 months then get ovaries out in the new year and have the aromatase inhibitor then. We'll see. I have an appointment to see oncology tomorrow, not sure how happy they'll be with my news about Zoladex.

Oncology appt at St Vincents

16th June

Today I saw the oncologist at St Vincents Cancer Centre.

I told her about my zoladex experience and that I didn't want to take it anymore. She said that the side effect was unusual (of course).... And asked if I had reacted to anything else....the only thing that was different in my life was that bloody injection 24 hours before! They take a lot of convincing oncologists.

So then we got down and dirty. I finally asked why the urgency, why do I need to take this super drug and consequently have non-functioning ovaries? What is it about me that we are trying to make me post menopause for this drug in particular? I get that they are finding better results and they only have enough data for post menopausal treatment to compare it, but what in particular about me that they are doing this for?

She told me that my full pathological response is uncommon. Especially with the type of cancer I had and with it gone so far as the lymph nodes. My cancer was considered high risk with the largest tumours being almost 2 mm. Okay - now that's what I meant. She said that they could only expect a good prognosis based on my result - As in no recurrence. (Oncologist won't declare cancer free just because they've removed it all until 5 years post). It now puts me on a completely different level of risk to my initial diagnosis however, where I was stage 3 cancer she is happy to say that I am now stage 0.

Having this all summarized for me made me very happy, scared, happy, relieved - i wanted to hug someone. I knew I had the full pathological response but what did that mean to them? My classification and my treatment and follow up plan?

So I'm off to see an oncology gyno next week for a second opinion on access to my ovaries and I have in my hand a script for Tamoxifen, daily dosage for the next 5 years at least, it's the lesser hormone drug. The oncologist confirmed that in my case, because of the good result - the differences in the drugs may not matter to me as much as it would have with a worst result.

So depending on what the oncology gyno says, I'll work out a plan. But I'm 80% sure I'll use this one for 6 months, check the side effects then decide on ovary removal in the new year after my other surgery.

The oncologist did try and talk me out of prophylactic mastectomy all the same......Friday 14th October 2016 - it's all set.

1 Year Anniversary of "you have cancer"

Well yesterday passed uneventfully - the 5th June 2015. Do you know where you were that day?

We spent yesterday driving through the misty rainforest of the Dandenongs. Devonshire Tea at Olinda Cafe and wandering through the villages of Olinda and Sassafras. I picked up some beautiful hand cream handmade up there for myself as a treat and the kids were spoilt at the Biggest Lollyshop. We had left behind a bottle of Verve when we stayed up there 2 weeks prior, so we went back to pick it up and show the kids around. We did mean to take them to William Rickett gardens, but it was raining and would be too wet and slippery.



It was 1 year ago that we sat in that Breastscreen waiting room after being called back and having further tests 2 days prior. Its a day that is very difficult to forget and is vivid in my brain. I remember what I was wearing, noticing that we were being kept for last. There was a lot of activity and a lot of apologies to us for keeping us waiting. I could sense the extra empathy and attention we were being paid by the nurse. Turns out she was waiting for the complete pathology results as there were some pages missing which dictated the type of cancer I had. She also knew my result and what was to come.

As we were ushered into the little room, I remember that I sat down and John was just closing the door when my now, breast surgeon opened my file and said the words "you have cancer"......just like that. John sat down very slowly and put his head in his hands. My breast surgeon continued to go through the results, while I stared at her stockings. They were patterned and I was thinking that she shouldnt wear patterned stockings with the patterned dress she had on - it was a big clash.......anything to take my mind of what she was saying. I did want to know, but I didnt. Much like a car crash on a freeway as you pass. You dont want to look, but you want to know what's going on.

She started again, I was thinking about the kids being motherless and then back to what she was saying. John asked a couple of questions, but otherwise we were crying, as was the very apologetic nurse. The nurse and I had spent quite some time together, with my boob out on the table while the radiographer was taking biopsies and more and more images. I knew they were looking for something with those images. I just didnt understand the extent of what they were seeing. Calcification was the only word mentioned when lying there with the nurse and radiographer.

Back to my breast surgeon, I managed to pull myself together, after consoling John.....and the nurse, and asked what now? what has to happen, when and how. She did keep expressing that this is a good cancer, being hormone receptive so they can treat it easily, and hey have been treating if for over 20 years now with the same regime. She explained we dont know how I will respond to treatment, we just have to start. Right upfront they knew that I had to have chemo, radiotherapy and mastectomy to overcome it. There was no negotiations.

They made an appointment for me at my GP that afternoon, so we could start in the clinic on the Tuesday to get things moving. The St Vincents Cancer Centre and Chemotherapy was next stop on this journey.

I wish I could say that this is over, and I guess the Cancer part is, but the ongoing therapies and surgeries are still in my sights. Perhaps by January 2017 it will all be over - I certainly hope so.

Crazy itchy fun

26 May

I'm sitting in the office, minding my own business when all of a sudden I am in a severe itchy state. My hands and feet are bright red and blotchy and the itching is getting worse and I'm going crazy - much to the amusement of my work colleagues. I've got my hands in the freezer, which I'd only just got my head out of after a prickly, hot flush! I start to feel a little bit overwhelmed and call my GP. She suggested getting my hands on some antihistamine as soon as I can and call back if things don't settle down. Luckily for John's (my boss) hay fever/sinus he has some zirtec in the office. After taking that, within 20 minutes things are feeling calmer and the itchiness has reduced to a dull buzzing. So this happens exactly 24 hours since my zoladex implant.

Man, I also have bad headaches from this implant which settles down after a week or so - coffee seems to sort it out :) this has got me thinking it's not the 'normal' I was hoping to return to after cancer. With the psychological stuff still hanging around I don't want any more 'treatment' and my body never seems to agree with drugs. I'd be a bad druggie!!! Ha, ha. Whenever I seem to take something and I read the side effects, I feel like my name is printed in the 'acute' side effects section. And the doctors deny what I'm experiencing because it's not common., just common with Kym.

I've been on the forums Reclaim your Curves and having dinner with the Boob Club girls. It's funny how they make this cancer thing feel very 'normal' because there are sooooo many of them. While the diagnosis was the scariest thing I've had to experience you eventually realise, as your specific diagnosis and the gradual success results of the treatment show you that it's not a death sentence. There's just that little thought in the back of your head whether they got it all, and fear of recurrence which raises its ugly head from time to time, but mostly you don't think about it.

Back to the forums, I realise that every person is so different and it's in the differences that are really important. A person who says they aren't allowed to have a reconstruction after radio for at least a year, whereas I had a reconstruction 5 weeks post radiation. The difference is that I had chemo and radio first, not mastectomy. If you have a mastectomy first, you are left flat chested with a horizontal scar and little skin left. Then they need to stretch the skin using expanders that they fill every day with saline until your skin is stretched to the size you want. Whereas mine was skin sparing, meaning they kept the pouch after removing the contents and made it fit my transplanted arteries and muscle. But maybe I couldn't have had that if I had immflamatory breast cancer where it effects the skin - there are so many different scenarios it's difficult to compare one persons situation to another.

So in light of my itchy party, I have an appointment with my gyno to book in my oophalectomy - ? Something like that - ovaries and tubes removed so NO MORE ZOLADEX IMPLANT. this should happen in the next few weeks.

25 May 2016 - another horse injection

Time for the horse injection again

I've just filled my syringe script - at the last minute! I'm lucky that chemist warehouse, my friend George happened to have some. He suggested I didn't leave it to the last minute next time, in fact he is putting me on a reminder list where they sms you each month. Now I'm sitting in a cafe waiting for my emla cream to work. It apparently numbs the area so I've lathered it in a place I think they will inject it and have to rub some more on half an hour before. George thinks I'll 'toughen up' and won't need the Emla cream anymore. Ha...

Visiting my PS yesterday, he said its nice to get to know his patients more personally rather than from a medical speak, now that we have our weekly catchup. We always have small talk as he drains out the fluid. Yesterday was 65 Mls so here's hoping its reducing. He's put some steroid in it this time to see if that stops the body building up fluid. My physio also tried lymphatic drainage, but as she said this is a different type of fluid build up to what she is used to. Anyway I had my bum rubbed all the same.

Surgery is most probably October or November - it seems it was based around my doctors but now our ability to go away is largely resting on John's work. It seems like there are always obstacles for us to go and if I was a superstitious person perhaps it is happening for a reason....

We had a beautiful weekend up at the Dandenongs at mountain retreat at ferny creek. What a little piece of heaven. It was a beautiful cottage amongst the trees with organic hamper, fireplace and spa in a modern little cottage. We had a wedding on the Sunday night which was so romantic and intimate I cried several times throughout the ceremony and speeches. It was our first time away together for more than 1 night since we had the kids. You forget what it feels like to be a couple and not mum and dad for a bit. John even made me breakfast with all of the little touches, candles, juice, pancakes, table set. I could get used to that. We pottered around Sassafras and Olinda villages exploring the little shops and wandered through William Ricketts gardens - it was freezing.




The same weekend we had Alex' Confirmation. I was privileged to be asked to be Nathan's sponsor as well. It was quite a touching moment. Not what I had expected. The Bishop was very personable and reached out to the kids. When he did the blessing for Nathan as I put my hand on his shoulder, it was very meaningful. The parents wouldn't have experienced it being so far away - it was such an intimate moment between the child and the bishop and sponsor.

As I sat there, I still thank God every day that I am here to experience my kids and their special moments, and for giving me the insight to have things checked out, even without anything to check. It is hard not to feel a little scared that it may have spread and I am always alarmed by the way my doctors describe me as high risk for secondary. But I have to believe that we are doing everything in our knowledge to overcome any recurrence. I have to think logically. Being on the forums, listening to some ladies who have secondary cancers but still living life, it makes me sad but their attitude toward life is precious and keeps me humble and makes me realize how lucky I am. How could you lie down and get all sad and depressed knowing they have more right to that than me but they don't and they choose living life.

Now we are back in the everyday, back at work but grateful to have such an emotion packed, re-setting weekend.

Survivorship

So I was scheduled for a meeting with the Assoc Prof Snyder of the oncology unit at St Vincent's. I wasn't exactly sure of why I was going, I assumed perhaps to check on any long term side effects maybe?

Anyway after filling in a long questionnaire I spent a couple of hours with the Professor. It seems that maybe I'm doing okay. I suspect it is mainly to assist those with little or no support and who can't get on with their lives....whether living in fear or can't get past it. He actually skipped whole pages of the questionnaire with me. Where I thought my side effects from the chemo and the chemopause were effecting my life, he said I'm doing very well and have come out of the treatment with little side effects!!!!!!!! Really!!!! I guess it's all relative, for a healthy person with very few ailments with my body to now getting out of bed or out of a chair with joints of an 80 year old is not really a concern for him.

So he did kindly tell me that I am a low risk for breast cancer - Shut the Front Door!!!!!!! I did wonder if I was talking to the right person for a minute or he had the wrong file in front of him....

With further discussion, I SHOULD have been low risk based on my profile. There is some concern that with girls developing as young as 9 these days means a longer period in their life with estrogen in their bodies. I was 16/17 before worrying about womanhood.

Pregnancy and breastfeeding give our bodies a break from the hormone and especially if it's before 35 - I was 35 and had 3 and breastfed for 6 months.

Also there is no cancer with my immediate relatives. But there is an online test somewhere that tells you this - I did it when I was diagnosed and lied to it saying I didn't have breast cancer and it told me I was a low risk.

Moving on I still have to decide whether to get my ovaries out. I'll be having my Zolidex - horse injection in a few weeks and start the aromatase inhibitor every day soon.

My surgery was booked for 24 June but my breast surgeon is still on maternity leave and can't do it until August. We were hoping to go to Disneyworld in September so that won't work. I'm 9 weeks out now and still having my hip drained of a seroma. So either I go with a different breast surgeon for June or I put it off until the end of the year - Nov/Dec. this is disappointing. We were hoping to have the major parts of it all over with and then go on our holiday. I'm trying to tell myself that this order would be better anyway - I can concentrate on getting healthy and fit for the holiday instead of the op in 6 weeks.

Here's my treatment plan art piece - only 1 more thing to do, not including the next 5-10 years of hormone treatment and possibly 3 years of injections.

I threw in a photo of my Mum and I for Mothers Day tribute and 40 odd years on and I realise I have the same hairstyle of new hair :)

I was also given a little circular pillow from Think Pink to sit on with my seroma, Andres decided it would be good for his teddy - so nicked it from me :) cute though...

Miss Jana and I were talking about how my Aunty just made 100 years old and how our friend, Heidi still has her grandmothers alive in their 90's - long living women. She said to me "well that's you too now Mum, now all that 'nonsense' is over with'. I chuckled to myself, yes it is Nonsense!! What a great word for it :)

Horse Needles and Tattoos

I survived my horse needle. I went to the cancer centre and talked through everything again with my oncologist. She now confirmed that there is always a plan b, plan c. Prue Francis from Peter McCallum and St V's, one of the oncologists was the latest author on the New England journal with this treatment (using an ovary blocker for a post menopausal drug) and found the slightly better outcomes.

Anyway, in to the cancer centre with a nurse, she started with a local anaesthetic to make a tunnel if you like, then proceeded with the zoladex needle which included an implant (so that's why it's so big). About 12 hours later had some leg pain and some twinges but so far so good. I can't tell if my hot flushes are worse or not, but the usual jumper on, jumper off, jumper on happens all day.

Today I saw the plastic surgeon. He drained another 80 mls of fluid from the donor site. He said he hates seroma's. Hah try and have one. I think he tries to be funny, but he's very dry. I asked him if he had any reservations/concerns about surgery on the other side, he said not at all. He explained that not too many ladies have the option of trying one side and then being able to change their mind, as mostly both sides are done at the same time. Only with the gluteal flap is it done one side at a time. Gosh imagine having both sides done and not being able to move both arms.

So we tentatively booked the Friday 24th June!!! Scary now that's done - it's 2 months away. He has to confirm it with my breast surgeon as she has gone off and had her baby. It looks like we might need to celebrate Alex' birthday a few weeks early and maybe I'll be out of hospital on his birthday all going well. I do think that even though it was a big surgery, I've faired pretty well. I have seen and heard some horrific stories of necrosis and infections, battered and bruised. My skin has faired pretty well after radiotherapy, it just looked like I had a bad sunburn but is fading already.

He did try and talk me into nipple sparing on that side, but I reminded him that I wanted the least surgeries, the least complications. That includes him wanting to create new nipples - what a useless operation. To create some lumps of skin - normally you are removing lumps of skin right!!?? Anyway I showed him these amazing 3d nipple tattoos I found on a website in Canberra called 'Tatts on Tatts off' he told me that his team of tattoo artists do a great job, but not 3d and he doubted it would look 3D. So I showed him the photos and he was surprised. Anyway, asked me for the website so he could show his team so they could learn how to do it too. As long as they aren't learning on me I was thinking.

I could fly to Canberra and get it done :) anyway I can't get that last part done for a while yet and it's just aesthetic anyway. He suggested 4-6 months after.

At least the plans are starting to come together and I can start planning the second half of the year.

Anyway back to plastic surgeon week after next to check the fluid buildup, physio appointments in between, cancer centre for survivorship program and another horse needle in the tummy and in 6 weeks time for my daily hormone blocking drug....what a fun filled 6 weeks ahead of me :/

Feels like back on the Train

26/4/16

So tomorrow I get back on the train journey. Tomorrow is my first zoladex injection - the cattle sized one! After speaking with my gynecologist, he did say it's a lot to have 36 injections over 3 years, but it would be best to do everything I can to prevent the cancer coming back. He said that I could start by having the injections and see how I go and if they are unbearable then have my ovaries removed as an alternative - or change to the premenopausal treatment until I'm 50.

He does doubt whether my ovaries survived the chemo and suggests that as they haven't worked so far that they are most probably fried and having surgery to remove dead organs may be unnecessary. The problem is we don't know and won't know! He has taken some blood and has sent it off to pathology for testing.

He did say that if it's the psychological part of going to the cancer centre each month that it could be administered by my gp instead at least. I have enjoyed my body being somewhat 'normal' without regular drugs or medication....until tomorrow then for 10 years. I just have to think of it like the pill.

My breast surgeon said no more surgery until I get full movement of my arm so my physio is now not mucking around......and it hurts! Today I had my torture, she apologised through most of it...:(

Thursday is my scheduled plastics appointment and am gearing up for more removal of fluid from the donor side - not looking forward to that. I wonder how much more fluid will need to be extracted??? It will also be the time to discuss the next surgery.

The other day I had my blog open and Jana read a part of it. She was shocked to learn that Cora had passed away. She asked me if it was that day and I told her it was back in September. I explained to her the reason I didn't tell her and she asked if I was upset and did I want to talk about it. She took it pretty well, but was quite circumspect for a while after that. She kept asking me if I was okay.....sweetie.

The Research

Some Research and light reading for anyone who is interested. The reason I have a dilemma and a decision to make :( At least I have options I guess......the link on the blog isn't working for some reason. But the research study was led by Prue, oncologist from St Vincent's hospital and she authored the journal. She's also the one who told us that my lymph nodes were clear after the second MRI.



Www.nejm.org/doi/full/
http://www.nejm.org/doi/full/10.1056/NEJMoa1412379

After going to my 2 torture appointments yesterday, last night was an interesting sleep. I really should be a bit smarter and aim to have these appointments on different days so I can get some sleep.

Starting with the physio who is forcing my arm above my head and massaging it at the same time. She talks so much and I know it is to distract me from the pain she is inflicting.

Then an hour later for the Plastic Surgeon to stick his needle in my hip sucking out the seroma, not once but he keeps going back until he thinks he has it all. 80 mls yesterday - not what I was hoping for. I am so sore after his efforts, even walking gives me pain in the site and pressure on my leg. I built my pillow nest to sleep - I literally sleep on pillows. My other side is sore from sleeping/resting/sitting on it all the time now too.

Out of the mastectomy and reconstruction (which is all now numb), the biggest pain is the donor site on my upper buttock/hip from his digging around in it every week. Funny my PS comes in and asks if "Im still a pain in the butt" ha, ha. Trying to be funny while Im in pain! Hopefully Tuesday brings little or no fluid to drain.

The cording from the axilla clearance of my lymph nodes hurts and the physio massages and 'pops' them. It feels like I am swollen in between my arm and pit. Here's a picture of what it looks like (not my picture but the same). They make it difficult to move your arm or abduct your arm above your shoulder. I had them from my armpit to my elbow.



Thursday is more torture with the physio and Friday is a chat with my gynocologist for some advice regarding my ovaries and Tamoxifen.

Hormone Preventative Dilemma

Dilemma
It's 6 weeks since surgery and I'm on a weekly visit to my plastic surgeon for extracting fluid from my donor site. The last extraction was 60 Mls so I hope it's reducing. He's got me wearing skins to try and add compression to the area. It's not a particularly pleasant experience so hoping for a reduction this week in fluid.

I'm also seeing the physio and have more movement in my arm - I still don't have full movement yet but hope to this month. I just have to get clearance from the plastic surgeon before going for broke at the torture lady's place (physio).

Yesterday I visited with my breast surgeon. I wanted to see her before she goes on maternity leave as I saw my oncologist the other day and she completely freaked me out.

As part of the cancer treatment and keeping it away, and particularly that they can only hope that if it had escaped into my body that the chemo killed anything on the loose, I need to have hormone therapy. Hormone therapy keeps the estrogen in my body at very low levels or none at all due to my cancer being hormone fed.

Anyway there are 2 types of treatment available, 1 for premenopausal women and 1 for post menopausal women. Pre is tamoxifen and post is an aramatose inhibitor. The aramatose inhibitor treats the whole body and research has shown to be the most effective treatment and more superior than Tamoxifen. So how can a premenopausal women take a post menopausal hormone therapy? Injections!!!!! The needle looks like a bloody cattle prod and it has to be administered monthly at the cancer centre. Apparently from what I've read it HURTS.

Photo of needle



Okay you say, so what it's just a little needle and after all of the cannulas I've had in my veins by now with chemo and dye for MRI's and CT scans what are you worried about I hear you say. After a mastectomy and reconstruction and radiotherapy every day for 28 days what's the problem?????

Well after the mastectomy/recon and hearing the pathological result, finally the cancer journey is over!!! No more treatment for cancer, except for the daily hormone pill I knew I would be taking. So then hearing I need to go back to the cancer centre every month until I turn 50 -,well that just depresses me. I was relieved to know that I wouldn't be having any more cancer treatment and now knowing that I would need ongoing injections for some years to come just brought me to tears!!.

There are options. The other option is to have my ovaries removed. As long as my ovaries are working, which we aren't sure about as I'm in chemopause possibly rather than real menopause, the superior hormone therapy, aramatose inhibitor won't work and I will have no ongoing protection.

So do I just take tamoxifen for a year until we know I'm in true menopause, then switch to the other, do I have my ovaries removed for the superior therapy or I get the cattle sized injection every month for a few years on the superior hormone?

I'm thinking short term on the inferior drug, if I stay in menopause then I can switch??? Problem is Tamoxifen can cause endometrial cancer for women who are susceptible to thickening or endometriosis - yep me!

So:
- Tamoxifen - premenopausal, stops hormones being produced by ovaries only (majority of estrogen produced in ovaries) and therefore breast fed tissue, can cause endometrial cancer in some women, inferior drug shown in studies
- aramatose inhibitor - post menopausal stops estrogen in whole body, but ovaries can't function for it to work, remove or injections to put ovaries to sleep, causes bone density loss

Anyway I have 2 weeks until my next oncology appointment to decide what to do!!!! Am I wimp??!!

Where It All Started

Tuesday

Today I had to go to St Vincents for a bone density scan.

I was a little early, so I decided to drop off some thank you flowers to Breastscreen with a note thanking them for their part in saving my life.

The receptionist didn't remember me but was thrilled that I came back to visit and give them my good news. They said they see the beginning devastation of a diagnosis but don't know the outcome very often.

Sue the nurse who cried with us at diagnosis, was not on that morning, but she called me when she was. She was thrilled to hear from me and explained why I had impacted her so much. Mainly that she was new to the unit, I am exactly the age and birthdate of her sister, she also used my situation, type of cancer etc for her assignment at uni. She had followed my progress through Christina whenever she was in, so she knew most of where I was at.

She wished me well and asked how the children had coped and John throughout the process. Also that it had been a long process, although judging by others journey it seems a lot shorter for me. Because of the order of things everything was booked in one thing after another, I hear of some women 2 years down the track thinking about reconstruction options. I couldn't think of anything worse than dragging this shitty subject out longer than you need to - it's been 10 months from initial diagnosis to cancer clearance with the pathology results anyway, and it will be 12 months with final surgery and then maybe 6 months after for nipple tattoo.

Anyway the Breastscreen girls complimented me about how healthy I look and love the pixie haircut. I'm still getting used to it though I must say.

Back to some Normality

I now have eyebrows, eye lashes and hair on my head and I am so very grateful. Thankful that I can fit into my clothes and shoes again without having to wear a moo moo ha, ha.

I'm back to my pre-chemo weight - the no eating for 3 days in hospital helped that along.

I was looking at my old photos and came across my fat feet - and I was happy to update with a photo of my foot today....scary!



Then I managed to squeeze into some sketchers and it squeezed the fluid up and I could briefly see my normal feet again......



And now......yay!!!!!

Busy Week 4

This week has been a busy week.

After developing a tightness under the arm again, which was suspiciously similar to that in hospital when I had the seroma, I didn't sleep much with worry and so called my PS. It was 5:45 am when I paged him and although I had a 8:30am appointment, I wasn't sure that if it was with Damien or Jan, the nurse but wanted him to see it to check it. Needless to say he was a little pissed that I woke him up. The problem was that it filled so quickly when I was in hospital so I didn't want to be in the same position again. By the time I got to the appointment he was cheerful and explained away the tightness and that I had 'cording'. The only criticism I have of him is the lack of information to know what's happening and you panic. The physio explained that cording is after the tie off the lymphatic vessels after removing the lymph nodes, they are empty and pull tight I guess.

The appointment was a little disconcerting. Damien started to ask did I have the brac gene (breast cancer gene). I don't have to have prophylactic surgery (preventative), I could have an implant instead of using my buttock tissue again.....I could come back 5 years later, we don't have to rush it!!!! The thing that makes my head clear of worry is when there is a plan. I thought there was an agreed plan, but now I don't know why he's got doubts. He didn't really explain instead told me to think about things and that we have time. The cancer side had to go and that was the priority. Anyway, I'm still sure - I just have to convince him that I am :). The good thing that came out of it was that he said "if I can say so myself, it is a bloody good job'. For me I'm looking at a very different me and it will take some time to get used to the new me before appreciating his artistry I'm sure.

I'm going into week 4 post surgery now and on panadol every 6 hours. I dumped the other painkillers after the not so nice side effects.

Today I went to see a physio to sort out my arm and shoulder. I can now raise my arm to almost 90 degrees which is great. But from her rubbing and popping the lymph vessels, I am also more sore than ever. Going back for more torture on Monday and Thursday next week. Considering I originally couldn't get an appointment With her until the 19th April and now she is squeezing me in to deal with it quickly, I am very grateful for the breast care nurse at Think Pink. She personally phoned Kate to get me in earlier. Because I'm jumping around between public and private for my care, I don't really have a breast care nurse consistently. So Andrea has been great and has worked with most specialists in Melbourne to get things done.

As part of the healing process, I need to massage and dress my wounds. There are 3 areas that I need to deal with. But I'm so queasy having to touch them or look at them. So at Susie's suggestion, I grabbed the scented candle that Lynda kindly gave me, the shower gel that Maggie gave me and headed to the bath to relax. Well I procrastinated and didn't deal with it - well not until quite some time later.



So I have an oncology appointment and bone density tests next. They will determine what drug I will take to block estrogen in my body to prevent recurrence for the next 5-10 years. I need to come up to speed more on my options before my appointment based on my gyno history. Apparently some of these drugs can cause endometrial cancers in some women. Just like chemo can cause leukemia and radiotherapy can cause breast cancer!!!

I came across a U.S. Website explaining how breast cancer grows - making it even more important for me to remove the other breast.

OVERVIEW


What is Breast Cancer?

Breast cancer is the uncontrolled, abnormal growth of cells in the breast. Sometimes the cells of either the passages that drain milk (ducts) or the milk-producing glands (lobules) lose the control systems for growth which can result in the development of malignant tumors that can invade nearby healthy breast tissue over time. For some patients, the cancer may progress and spread to the lymph nodes under the arm and eventually may invade other parts of the body.

Breast cancer is caused by a mutation in the genetic makeup of the breast cells, which may lead to uncontrolled growth. These genetic mutations usually are a result of the aging process and life in general, rather than inherited mutations.

U.S. Breast Cancer Statistics

About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime.1
For men, the lifetime risk of getting breast cancer is about 1 in 1,000.2
About 85% of breast cancers occur in women who have no family history of breast cancer.
About 5-10% of breast cancer is caused by a genetic abnormality inherited from your parents.3