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.