Category Archives: Me

Cancer Update: Radiotherapy Day 6

So I’ve had a few days of radiotherapy now, and thought I’d provide a general update as to how it is.

So I rock up at the hospital, sign in and be advised if my appointment for the following day/week has changed, go to the waiting area, and hang about and wait.  The waiting usually isn’t for very long, and then I get changed into my hospital gown, go wait in the second waiting room for a few minutes, and then get into the radiation room.

So far I’ve only attended one of these appointments alone.  I’m very lucky I have the support of friends and family to keep me company in the waiting room, even if it is for a short period.

So in the radiation room I tell them who I am, what they’re treating, and lie down on a table under a big machine.

 

Not the actual machine at the hospital, just one like it from a site on the internet

As I’m getting treated for breast cancer, my arms are above my head and I’m holding onto some bars.  The technicians mark on my skin where I got some tiny tattoos, and then line me up under laser beams (I am high tech) to make sure I’m in the right spot for the radiation to be delivered.  Once they’re happy they leave the room and I get shot with high energy photons, twice, diagonally through my breast in order to avoid my heart.  It takes maybe 5 minutes.

I don’t have a problem appearing nude in front of people, so constantly being topless in front of the technicians isn’t a problem for me, I can imagine it would be for some people, particularly as some of the technicians are men.  All of the technicians are lovely, and highly professional.

My breast is beginning to redden from the radiotherapy, which is the expected side-effect.  I am after all getting constantly burnt with radiation.  It’s also a bit tender, which isn’t surprising as all the cells are constantly being damaged and then have to repair each day.

I have been warned that I might get extreme burns (blistering and/or skin cracking) as I progress through the treatment.  I don’t know if the burns will hurt as much as they will be annoying.  The hospital will keep an eye on any burns and side-effects to ensure that I am coping ok and provide assistance where possible.  I have already been provided with sorbolene cream to put on the irradiated area twice a day in order to keep the skin moisturised and soothed.

I’ve also had a cold/bacterial infection while doing this, so it’s been more shit than it normally would be.  I only have 14 more sessions left.

 

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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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Cancer Update #3 (post op)

So I’m sitting at home now, mostly able to type, much clearer headed, and healing.  There is a wide range of movement I can’t do, and I’m still figuring out bits of that.

I’ve been sleeping in our recliner couch for the past 2 nights as I have been worried that sleeping in my own bed would be too uncomfortable, mostly due to an inability to roll from side to side, and getting up being a real pain the side.  I might graduate to sleeping in my bed tonight, I don’t know yet.  My neck would certainly appreciate me sleeping in my own bed, but we’ll see.

I have two rather large incisions on me.  One under my arm where the sentinel lymph node was taken, and one where the tumour was removed. If I cared about such things, I’m fortunate that both of the scars (when they eventually heal) will be in non-visible locations.  I’m actually a little disappointed about that, I think that scars are cool.

The incision under my arm is the one that hurts the most.  This isn’t surprising as that is the location that sees a lot more movement (twisting, lifting, rubbing, etc).

Yesterday was a day of minimal food as I was still feeling nauseous thanks to the operation, pain and the drugs I was taking.  Today I feel way more human and I aim to try the delicious looking cake my sister has made for me. I also want to go for a walk around the block to get my body a bit more mobile and drop the neck pain I have.

I could go through the ins and outs of Wednesday (surgery), but I won’t (unless you want me to) other than to say it was a really long day, the staff at the Royal Women’s Hospital are fantastic, and that it was slightly worse than I expected it to be.

I won’t get the results of the biopsies of the tumour and sentinel lymph node until Monday week, so in the interim I heal, continue to be spoilt by my loved ones, and gradually each day become more and more independent.

Today I could undress myself, tomorrow I might even be able to shower on my own.  The wonders of a body which can heal itself from invasive surgery.

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Cancer Update #2

So today I went and got my other test results (blood test, biopsy of another anomaly) and spoke to the surgeon and breast cancer nurse about surgery on Wednesday.  I probably won’t be blogging immediately after the surgery, not the least because they’ll be operating under my left arm (in the arm pit) and that means that typing and the like isn’t on the agenda for a few days.

I’ll state this up front – this whole thing seems so unreal.  I am not obviously sick, I do not feel sick.  Apart from some pain where the tumour apparently is against the chest wall, I don’t feel like I have cancer – whatever that feels like.  Wednesday is going to make the whole thing a lot more real, and that’s both scary and reassuring.  Scary because cancer is scary.  Reassuring because I do feel a little like an imposter right now, because I feel mostly fine (just stressed).

Anyway – today’s visit to the hospital had my blood test results completely normal (with slight vitamin D deficiency which is unsurprising as it is winter), and the biopsy coming back completely clear.  We went through all the process for the pre-op stuff, told how much it’s going to hurt (a fair amount), and how much I’m going to have to wait (a lot), and reassured about some of the side effects, like the blue dye that is used to trace the lymph node paths will stain my skin – that’s normal.

Also we went through some worst case scenarios, just so I was across them.  The nurse was impressed that I was so calm and in control – that is my default state, I will probably fall apart later – and that’s ok too.

So a week off work (this week) and possibly some time of work next week to ensure I’m healing well.  A further biopsy of the tumour after it has been removed builds the next step scenarios.  Best case, I have 4 – 6 weeks of radiotherapy a month after surgery, and then on a drug for 5 – 10 years.  Worst case, I have additional surgery and/or chemo before radiotherapy and medication for years.

Yes I’ll probably keep blogging about cancer, because writing stuff down helps me sort through it.  I do want to blog about other things to, and once I’ve gotten the big bits out of the way, I’ll probably go back to doing just that.

I do want to say how grateful I am to have been born in Australia and eligible, thanks to my citizenship, to access free healthcare.  All of this treatment will cost me very little.  The medication will be the most costly part.  The operation, radiotherapy, and consultation visits will be covered by my taxes and the paid taxes of other people.  This is a fantastic thing, and means that I don’t have to ask myself if treating possible cancer is something I need to do or is it something I can live with.  I do wish people in other countries without “socialised medical systems” could access the level of care that I will be accessing for the cost that I will be paying.

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Cancer update #1

So yes, I’ll be blogging about cancer from time to time, as a way to keep everyone updated, and to save me having the same conversation over and over.  Not that that is necessarily a bad thing, but I enjoy efficiency.

Today I had my appointment at the Royal Women’s Hospital to meet the breast surgeon, breast cancer nurse and find out more about the next steps.  I might have surgery as early as next week – which is much sooner than I anticipated.  The breast surgeon also wanted a biopsy of something that was noted in the first radiology report on my right breast just to be on the safe side, so I got one of those too.  It is most likely a regular, bog-standard lymph node, but the surgeon wants to be extra, extra sure because you shouldn’t mess around with cancer.

I was also told that the reason my tumour is so goddamn painful, is that it’s sitting on the chest wall – so that’s kinda helpful and still annoying.

I also need to get a blood test, but as I was insufficiently hydrated today, I’ll get that tomorrow after lunch.  Must go and get a glass of water.

This biopsy was far less painful.  I told the doctor performing it that I cried for an hour after the last one as it was so incredibly painful, so she made sure there was extra local anaesthetic and waited for it to take effect.  We also laughed a lot, which was nice, but weird when people are jabbing needles into you.  I don’t think they appreciated my joke that ultrasound gel is like semen in that it gets everywhere – and I probably should have self-censored that, but I have cancer, and some jokes get made.

So next steps are surgery (very soon), 6 – 8 weeks of healing (and hopefully no follow up surgery), 4 – 6 weeks of radiotherapy Monday through Friday, and then medication for 5 years.  This all assumes that my tumour tests negative to HER2, which I have an 80% of it doing so.

Just quietly, Breast Cancer information in Australia (at least) is incredibly cissexist.  Hugely cissexist, and it makes me uncomfortable.

How am I doing?  I’m pretty good right now.  Every now and again I feel overwhelmed with what’s happening and anxious – but that’s to be expected.  I like having plans, and knowing what’s going to happen next, even though some of that is a little nebulous and fluid because it depends on things we don’t yet know 100%.  I’m not particularly fussed about having scars on my breasts (something I used to think about as a kid anyway, because I liked the look of ritual scarification).  I am somewhat concerned about radiotherapy, because that sounds intense and annoying (but is also far enough away in the future for it not to be an immediate concern).  I am mostly ok with the idea of medication, I think I’ll be able to manage the common side-effects in a way that works for everyone concerned.

Also, outing yourself as non-monogamous at the hospital straight up is easy, particularly in Australia in the public health system in metropolitan hospitals (other areas may vary).  I brought both partners with me to the appointment, and made it very clear that they were my partners.  It was written in my file, along with my medical history, and everyone was cool with it. In fact one doctor said that I was lucky to have the extra support.

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So I’ve got cancer

I found a small lump in my breast, it was tender so I went and saw my doctor.  He sent me off for imaging, and then I saw a specialist who sent me off for a biopsy (that REALLY hurt).  Then I was told I had a very small (8mm) cancerous tumour in my breast.  I’m now an official member of the, “You’ve got cancer” club.  I’m not impressed.

I’ve found the cancer so early that I probably only need surgery, radiotherapy and Tamoxifen to treat.  This all depends on what the surgery and subsequent biopsies show really.  It’s a fun environment of, “Do A, then possibly do B or C depending on results of A”.  Being a big fan of plans, I plan to work out what is going to happen, how I will manage it, and what support I need.

This is a blog post (which may be updated as more info comes through, or new posts added, I’m not sure), which will outline what I want and don’t want over the next 6 months (as a starter).

Things I want

  • To keep working as much as possible
  • Snuggles
  • Chocolate
  • Plans
  • Shoulders to lean/cry on
  • Having meals cooked for me for those days I don’t cope
  • Understanding
  • Conversations with people who have survived cancer

Things I don’t want

  • Advice regarding natural therapies for cancer treatment
  • Being treated as if I’m going to fall apart any second
  • Being told to take time off work

Kvetching circles completely apply here.  This is my condition, my body, my issue.  Do not make it about you, do not make it about how you can feel better that the roll of the dice went badly at my end.  I have enough to deal with, without you making this about you. (This is not currently directed at anyone I’ve told, this is just case it needs saying).

I will continue to work, I will blog, I will study, I will cook, I will yoga, I will … because I enjoy these things, because they’re good for me, and because life goes on.

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