Tag Archives: me

Breasts and cancer

It’s been a while since I’ve posted here, I’ve recovered from radiotherapy (harder mentally than surgery because you’re completely exhausted), I’ve travelled to India (will blog more about that later), and it’s almost Christmas.

I’ve been collecting some articles about breast cancer, the cost of treatment, what we die from young (women = breast cancer), how trans people need to be careful of breast cancer, and really what you can do to ensure that you catch cancer early and get it treated quickly.

Continue reading Breasts and cancer

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Cancer Update #8 Radiotherapy Mapping/Planning

So this radiotherapy thing is becoming realer, and I’m getting more anxious about it.  It’s very easy to be flippant about these things when they’re off in an undefined time period in the future, but the moment it becomes real, the flippancy disappears and the anxiety settles in.

I’m more anxious about this than I think I was about the surgery.  I’ve had surgery before, I know what to expect (more or less).  I haven’t had radiotherapy.  Now that I know my radiotherapy date starting I will contact the people I know who have had breast cancer and talk to them about what to expect.  I don’t know how alarmist the radiotherapy doctor is being about being a fat woman having radiotherapy versus a thin woman (apparently I have a greater risk of skin cracking due to the burns I will get), or whether that is because I have larger breasts and I’d have that risk regardless of my weight.

Both the doctors who saw me today, the radiology doctor in training and the consultant weren’t particularly personable.  Their hands were FREEZING and I got quite cold as they poked and prodded my breasts before drawing on them in texta. I didn’t appreciate their talking about me as if I wasn’t really there, but I didn’t mind being part of a doctor’s specialisation education.

The nurses/radiotherapists on the other hand were absolutely delightful.  Their hands were warm, they were reassuring, they talked to me about what they were doing and how long things were going to take.  They apologised when they were about to touch me with something that was cold (mostly the ruler they were using) and ensured that I could get up and go to the toilet when I couldn’t wait any longer during the appointment.

So radiotherapy starts on the 22nd of September. A bit under 2 weeks away.  I will be going to the hospital 5 days a week (business days) for 4 weeks (barring sickness).  I may get very fatigued, I may burns that resemble severe sunburn, I may have none of those things and just have the inconvenience of my days interrupted with a hospital appointment.

I am a bit over the unknowns.  My life generally has a lot more certainty in it, and I prefer it that way.  But soon things will be back to normal (more or less).  I’ll start on the tamoxifen, work through the side-effects, and just be myself.

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Cancer Update #7 Radiotherapy Consult

So today I went and saw the radiotherapy doctors at the Peter Macallum Hospital, Victoria’s premier cancer hospital.  Before I talk about me, I want to talk about that hospital because it was one of the most amazing patient orientated places I have ever been.

The Peter Mac (as it tends to be known to everyone) is a bit of a maze.  That is a big downside when you’re stressed and confused and don’t know where to go.  However, once you get where you need to be – in my case the Breast Cancer clinic, the waiting space is absolutely amazing.  The various clinics are located alongside each other, with one big waiting room.  And what a waiting room it is.

I wasn’t there for very long, but this is what I saw.  There are jigsaw puzzles, with tables set up to do jigsaw puzzles on.  There is a big box of wool, with knitting needles and I’m guessing crochet hooks, so people can knit/crochet while waiting.  The supporting columns were all decorated with yarn bombing.  There were colouring pencils and adult style colouring pages.  There were board games and a chess board.  There was a library of fiction and non-fiction books.  There were magazines in many different languages.  There were comfortable chairs.  There were treadmills if you want to walk off anxiety or do your daily exercise.  There is also free wifi so you can browse the internet/read RSS feeds/play games on devices.

I know the Peter Mac is moving next year to a new location on Grattan Street, across from the Royal Melbourne and Royal Women’s Hospitals, and I hope they keep this very patient friendly and supportive atmosphere in their new building.  It was great to see so much creativity.  A little more on what goes on is here.

Ok, so me… I saw a younger doctor who initially told me I’d need 6 weeks of radiotherapy, and then went through my cancer diagnosis history and overall health.  I reported something* which I think might be related to the surgery I had, he wasn’t sure it was related, but I’ll speak to the breast care nurse at the Royal Women’s tomorrow anyway.  He took me through the not very likely, but serious risks of having radiotherapy, and then went off to find his supervisor – who is the doctor I’d actually been referred to see.

The supervisor doctor said that I’d only need 4 weeks (which is what the RWH had said), and that overall that’d be better for me as it means that it’s over quicker and the immediate side effects don’t last as long.  I will be called for a mapping appointment which will be in the next two weeks, and then radiotherapy will start two weeks later than that… probably.  Apparently the planning of how to deliver the treatment without impacting on my heart and lungs can take up to a week, so the radiotherapy won’t start as soon as I expected.  This is ok, I am not an urgent case. Given my cancer is at an early stage and appears to be completely removed from my body.

* I have some pain under my breast that seems to be as if some fluid (oedema) has formed as a result of surgery. It might resolve on it’s own, it might need to be drained.  I’ll get a second opinion, because it’s sore and that means that I’m not doing all the things I’d like to do otherwise.

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Cancer update #6 To chemo or not to chemo, that was the question

And the answer is no, which is good.

This morning we saw the oncologist and she was LOVELY, really really LOVELY, and laughed at our jokes and thought we were funny (which is always nice).  I am still super impressed with how the hospital, the nurses and the specialists are dealing with my two partners.  They pause briefly after I answer their question as to why I’m being accompanied into the room by two men, and then move on like it’s no big deal (which it isn’t).

Anyway, the oncologist said that with my tumour profile that the Oncotype DX test would essentially be unhelpful, and that with radiotherapy, and tamoxifen for 10 years that I will be right.  That’s essentially what she said, she talked a lot about the types of tests already done, the fact that the growth factor test is less reliable than the others (greater likelihood of false positives), and as it is stating a different finding than the other tests (grade 2 tumour, slow growth generally, no spreading into the lymphatic system, tiny tumour, etc) that she doesn’t think the Oncotype DX test is required.

She’ll refer me to the Peter Mac do to the radiotherapy as the Royal Women’s Hospital doesn’t have radiotherapy services, and I’ll need a month (4 weeks) of radiotheraphy at least.  I should have my initial appointment with them in the next two weeks, then an appointment to line up the machine and tattoo me, and then radiotherapy, 5 days a week until it is done.  I should be able to work while being treated, but will feel quite tired and a bit sore.

All in all, it was nice to get some good news.

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Cancer Update #5 – Results of surgery

So today I saw the breast surgeon and got the results from surgery.  In fact one of the results was delayed and we spent time sitting around the hospital waiting until it was ready – bumping into an old friend who had breast cancer some time ago, and who was there for a checkup.

The good news is that they have removed all the tumour and that there was no cancer in the removed lymph node.  They confirmed the grade of my cancer at 2, and once removed it was 13mm – so 5mm bigger than the ultrasound put it – which apparently is common.  There was some cancer in the surrounding tissue, but not at the edges of the margin they removed so they believe they got it all.

There was no HER2 associated with the tumour so chemo is not mandatory.  However, as I am young (as far as breast cancer goes) and because the growth factor of the tumour is 25% (which is higher than the 5 – 10% they prefer), the surgeon suggested that I might want to considering sending a sliver of my tumour off to the US for further testing to see if chemo would be beneficial.  However this comes at a hefty price tag of $4000 (not covered by Medicare or private health cover).  The surgeon wanted to state that it is something I should consider, but he said that he believed that the radiotherapy and Tamoxifen would more than likely be sufficient given the make-up of the tumour.  I have an appointment with an oncologist on Monday to get more information as to what they think regarding the test and chemotherapy.

The surgeon was extra impressed with my healing prowess.  He said that it looked like I had surgery a month ago, not a week and a half, when he removed the dressings.  I heal well, I probably should have been involved in more risky, extreme sports as a young adult and tested my healing to the limit.  Except I’m not a fan of being adrenaline and pain.

I’m really relieved that I don’t need more surgery, and that I probably don’t need chemo.  I was more stressed about more surgery as that was an immediate, unpleasant experience – one I didn’t want to repeat any time soon.  I’m not sure about chemo yet, I’m going to gather more information, including from people who’ve survived breast cancer, and determine whether or not paying for the testing is a worthwhile investment, or whether I should stick with the most likely to be successful existing treatment of radiotherapy and Tamoxifen (plus other drugs as needed).

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Cancer update #4 (one week since op)

I’m still here, recovering as well as can be expected really.  It hurts a fair bit, and when it’s not hurting it itches. I know that itching is a sign of healing, but it’s really irritating nonetheless.

The incision under my arm is about 8 times larger than usual, and it’s cut through muscle, so that’s the one that is causing me the most grief.  The lymph node was clearly busy hiding and not wanting to be removed.  I have most of the movement back in that arm now, I even was able to lie on my left side last night, so it’s healing slowly but surely.

I have almost one more week off work to complete the majority of healing, and an appointment with the hospital on Monday to go through the next treatment steps.  It’s unlikely that I’ll need more surgery (15% chance) or chemo (20% chance) so it’s more likely they’ll check how I’m healing up and propose a date to see someone about starting radiotherapy based on how fast I’m healing.

I’m somewhat anxious about Monday because I don’t know what is going to happen.  This is understandable and unsurprising.  I will be taking my partners along with me, who the hospital has been very good with, so I have all the support I need, and so they understand what happens next.

Mostly I’ve been spending time on the computer reading twitter, blogs, playing games, and spending time catching up on TV.  Lovely people have visited me and brought me gifts of tasty food, hugs and their company.  I have received flowers from friends, and calls from people checking in on me that I’m ok. I am very grateful for all the support and love, and it has really helped.

I’m looking forward to joining the Boob Club so I have a support network of people who’ve been where I am now (or who may be where I am now).  There is always the risk when you join a group of people with a specific interest that that may be the only thing that you have in common.  I’m sure I will find other women who are into social justice, queer rights, and cooking (not necessarily all at the same time).  That’s not too much to ask.

I’ve been thinking about Chally’s recent post “What not to say to someone in hospital, part one“, after a call I received from one of my work vendors (as in she’s the account manager for a company and I manage the contract between her company and my client).  She was asking me questions about how I was going, as she’d just found out about my diagnosis and surgery, and I was thinking that some of those questions were incredibly impolite.  I like her, she’s lovely, but asking me if the surgery involved the removal of my breast isn’t really something I’d ask someone I had a professional relationship with.  People are strange.  It’s that blurred line between working with someone for years (in this case about 5) and knowing each other well, and what the actual relationship is.  It didn’t upset me, I just thought it was inappropriate and something I need to consider for the future.

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I’m not afraid of dying

I’m not dying.

I was chatting with James last night, in between sleeping bouts, about things and he mentioned that he was afraid of death, the cessation of being, and I replied that I’m only afraid of dying from the viewpoint that I might leave those I care about (and for) without means to look after themselves, and as I currently have a healthy life insurance policy AND a decent amount of superannuation, this isn’t an issue.

I mean I don’t want to die, I’m quite enjoying being alive, and I’m not looking forward to dying any time soon, but I’m not afraid of dying.  I’ve been faced with my mortality twice now in the last 10 years of my life.  The first time was when I had an ecoptic pregnancy, I was in a lot of pain, I lost a lot of blood, and the whole thing was rather unpleasant (as an understatement).  Most recently it was being told I have cancer.  Sure the cancer was caught at a very early stage, but it’s still a condition that can potentially kill you.

My cancer diagnosis has been stressful, and as there are multiple paths my treatment can take I yet don’t know the exact shape of the rest of my journey, but I do know I’m going to be on the other side of the most invasive part of the treatment in the next 6 months.  I suppose a large part of not being stressed about dying from this is because I am 99.9% certain it’s not going to kill me, it’s just not going to be fun.

But even if I did die, I have done my best to make the world a better place.  I have worked hard to ensure that those I love and care for will be financially stable and secure after I have died.  I have loved and been loved, eaten good food, and travelled to fantastic places.  I haven’t done everything I want, but I have achieved a lot.

Death holds no fear for me right now.  It’s a weird, but good place to be.  I know this comes with a degree of privilege, particularly financial privilege, and I have worked hard to make this the case.  Ten years ago, I would not have been in this position, it is a very recent thing that has made this the case.

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