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.