It’s been a while between posts for a number of reasons. I was too uncomfortable to sit still for long enough to even consider typing at any great length. I was too busy eating and being waited on hand and foot. If I wasn’t eating, relaxing or spending time with the girls, I was sleeping. Not much time left for typing blog posts. Even though my social life has been greatly reduced and I’ve become virtually useless in caring for my own children, it’s been hard to find the time to type this post even though I’ve been thinking about doing it many times over the last week and actually started it on Thursday. So I’ll update you all on my progress since my last drug induced post.

I checked out of hospital on Saturday, that’s only two nights in hospital. They really get you out quite quickly. So on shaky legs, off “home” (Aunty Marie’s) I went with a hop, skip and a jump. I was happy to be going home where I knew I’d be cared for extremely well, surrounded by my favourite people. I was worried about going home with the drain in but there was no way I could handle staying in hospital until the drain was due to come out 7 days later. They just don’t do that and do think that the patient will be more comfortable in their own surroundings and recover quicker. It finally came out on Wednesday after causing me lots of pain and discomfort (more discomfort than pain though). It was such a relief to have it removed. There was approx 6 inches of tubing inside my body to drain the fluid out and I could feel all of it. Being skinny made it worse because it was right there under the skin. I could feel it when I moved, when I laughed, when I cried, when I was just laying in bed trying to sleep. Anyway, all gone, now I’m just left with so much nerve pain, hypersensitivity and numbness I can’t even touch my arm, under arm, chest wall or back without feeling sick from it. This will get better with time and daily exercises but for the time being it’s horrible. I have a little handmade pink pillow in the shape of a jelly bean from Choices that I pop under my arm to keep the arm from touching my torso. It’s great, I’ve called him George and he goes everywhere with me. I feel a bit lost if I’m without him. Since the drain was removed a build up of fluid has also appeared under the skin under my arm. I had it drained off this morning (Saturday) and it’s already started building up again so will be going to my GP on Monday for another shot at it. Icky I know but not a bad as it sounds. The strangest thing I’m dealing with in this regard is phantom boob syndrome. A name I’ve made up for when I can still feel
sensations in my left breast even though it’s had the chop. That messes with the mind a bit. Now I know how people feel when they’ve had a limb removed and can still feel it at times. It’s all about the old memories of those things we call nerves and how they have to make new memories.

Coming home from hospital was a mixed bag. I was looking forward to being with my loved ones but at the same time scared about leaving the security of the hospital and heading home to my new reality. I didn’t realise this until I walked in the door of Aunty Marie’s and broke into tears. It came out of nowhere. One minute I was fine, the next I was having a good old cry. The flood of emotions from the previous few days had finally caught up with me. I was tucked into bed surrounded by a million and one pillows, given one of my stronger pain killers, which would also help me off to la la land and stayed there for an unknown number of hours. After that effort I decided no more sleepy pain killers during the day. The following days were also mixed bags. Some good, some bad, most days with a mixture of both. It was difficult to have a shower and dress myself. I couldn’t do it alone initially. This was frustrating and was really starting to get to me by day 3 or 4 post surgery. To relieve the frustration I had a few cries but again, not anywhere near as many as I thought I would have post op. Just thinking about frustration, I’m proud to say I’ve become much more tolerant of the people around me. I can be a bit short tempered and intolerant of those close to me at times but since this has happened I’ve taken stock of what really matters and all those little things that used to annoy me, well now I just don’t let them bother me. It really is that simple. Hopefully I can continue on with that frame of mind for some time although I have no doubt that old habits die hard, and going through chemo may change me back to my old ways. If chemo doesn’t do it, hormone blocking therapy is likely to. Both will put me into early menopause which is devastating in itself. Hopefully I take after my mum who had minimal menopausal symptoms. Fingers crossed!

I’ve been having lots of laughs, definitely more laughing than crying has taken place over the last week which was quite unexpected. Aunty Marie’s house is where our family comes to recover and to laugh. It’s where my Mum and my Aunty Lyn came to recover and be cared for during their own cancer treatments (unrelated to my own type of cancer so not genetic). My cousin Anne and Aunty Marie’s daughter has also been through her own cancer experience and no doubt found great solace in spending time here with her mum. My Mum has told me many stories of her and all of my aunties during these times and it warms my heart that during such hard and sad times, laughter has always been the very best medicine. I’ve been compared to Aunty Lyn calling out from the bed asking for this that and the other. I’ve got big shoes to fill if that’s the case. Aunty Marie gave me a bell to use but no one could hear me so I reverted to texting when I was hungry or wanted attention. Mum and Aunty Marie have also been the tucking in brigade, getting me comfy and tucking me into bed each night, spraying smelly stuff on my pillow to help me sleep, putting everything I might need during the night at arms reach. So spoilt! They keep telling me I deserve it so I’m lapping it up 🙂 The laughing has been my favourite past of the last week even if it means nearly wetting myself and being in pain from laughing so hard.

Over the last week I’ve been taking a mixed bag of drugs and it’s really only the start of it when I think of the road ahead. We’ve been joking all week about my drug pushers, I’ll call them M and AM. They tell me what to take and when, they were even keeping a track of my drug habits in an exercise book and would remind me when to take the next lot. I hope they don’t send me a bill or send their debt collectors around. M and AM would make recommendations (push) different drugs on me depending on my need at the time. Normally I like to take a more natural approach when in pain but that option has left the building people so I’m embracing the drugs to relieve my physical suffering. It does frighten me the huge amount of drugs that will be pumped through my body over the next 15 months (plus 5 years when including the hormone therapy). It’s not only the chemo drugs but also all the other drugs to help with the side effects. But when I look at the bigger picture I’m more afraid of the cancer coming back so I’ll swallow what I have to to get through this cancer free on the other side, drugs, side effects and all. The whole mixed bag. Back to mu drug pushers though, I feel like I’ve been welcomed into a whole new club, one I didn’t think I’d join until I was much older. Many of you may be part of this club whereby you have so many drugs to take that you need a plastic container with the days of the week on them to remind you what to take and when. I am exaggerating a little because I really haven’t taken that many that I could possibly lose track, it’s more the discussions about all the different type of drugs for different symptoms and what works the best in different situations. And also taking one lot of drugs that might help some symptoms but then cause other symptoms so then there’s the need for more drugs to relieve the new symptoms caused by the first drugs! I like the ones that help me sleep but not the ones that mess with the well oiled machine that is my very regular digestive system, if you know what I mean.

So I got the pathology results on Tuesday and it’s also a mixed bag. The good news is that they removed 23 lymph nodes from under my arms and only 2 were cancerous. The two involved lymph nodes lie closest to the breast and there is no extranodal extension – apparently this is a good thing. The bad news is there were two tumours and they were bigger than expected from my pre op tests. One of the invasive cancers was 32mm and the other 44mm. Once a cancerous breast tumour hits 40mm they do radiation on the chest wall where the cancer was. This is something I was hoping to avoid as it will make rebuilding a nice looking boob that bit harder. I haven’t seen the radiation oncologist yet but I’ve been told by my surgeon that this is what’s going to happen. The DCIS (ductal carcinoma in situ) was also much bigger than expected. From the MRI and mammogram it looked to be about 6cm but in fact was 10cm. The good news in relation to the tumours and DCIS is that they all had clear margins. All of this means there’s less of a chance it’s spread to other areas of the body. The DCIS was close to the chest wall at 0.2mm but because this was the DCIS and not the invasive tumours this is ok apparently because the cancer was contained within the milk ducts. The other bad news is that both tumours were grade 3 when they thought it was grade 2 from the core biopsy. Both tumours are similar in their pathology. They always knew it was an aggressive cancer (mainly because I’m young and it’s HER2 positive) so this is really of no surprise and the fact that it is HER2 positive means they have another form of treatment to stop it returning. Here’s some light reading on HER2 status if you’re interested. I’ll go into my treatment in the next blog post. It’s pretty in depth and will take up one blog post on it’s own. To be honest my pathology report is a bit hard going and I’m looking forward to seeing Beck so she can help me decipher it. Of course my surgeon has told me the important bits from it which I’ve relayed above but I’d like to know as much as possible in my hunger for information about what is happening to me.

Derek and I went to see the medical oncologist on Wednesday and Friday. There was just too much information to go through in one session and it was good to go away and think about a number of things before going back in with more questions. We’ve got some very tough decisions to make surrounding the next stage of treatment and I’ll write more about this once the decisions have been made. No matter what the decision I’ll be back in Brisbane in 3-4 weeks for my first lot of chemo plus more tests before it all starts. It seems never ending at this point.

On Thursday evening I also went back to the Lymphoedemia and Breast Oncology Physiotherapist. She’s been great. I saw her before surgery and she prepared me for what I’d be in for post op and exercises to help deal with it. I’ve been doing my exercises religiously and have regained a lot of movement in my left arm. During surgery nerves are stretched and moved out of the way to get to the lymph nodes, particularly in the higher levels. This means that the nerves need to regenerate and relearn what they need to do. I still have a long way to go but it’s very promising how fair I’ve come in only a week. I’ve got a lovely sleeve to wear on my arm whenever I fly (for the rest of my life) to help prevent lymphoedemia. I already had a taste for this type of thing when I had to wear compression tights when pregnant with Polly due to varicose veins on my legs, the sleeve is much easier to bear and much easier to put on without a big pregnant tummy in the way. After that appointment Mum and Aunty Marie gave us the night off so we had dinner at a local Thai restaurant. Yum yum. I’m going to make the most of the next few weeks and am looking forward to spending time with my family and friends including Beck and Amelia who has recently returned from the UK. I’m sure this time will also include lots of laughs, yummy food and memories to help me through the tough time ahead, just as this last week has.

Derek and Rosie left today (Saturday) for their road trip back home with a stopover in Agnes Water. Mum, Polly and I are flying home tomorrow (Sunday). Rosie and Polly have both been amazing and have adjusted really well to being away from home. Rosie has become the biggest daddy’s girl which makes me a bit sad because she’s always been more of a mummy’s girl but I’m happy she’s been happy and spending more time with her daddy. Mum and Aunty Marie have loved tending to Polly’s needs but again it’s made me a bit sad that I haven’t been able to do the basics such as feed her, change her, pick her up for a cuddle without help. Everything a mother does for her baby. They’ve both been in great hands though and that’s what is really important.

It’s late and I should be in bed. If I don’t go now, the tucking in brigade will have gone to bed and I’ll have to tuck myself in!

A quick update from the hospital bed post surgery. All went well and am actually feeling ok emotionally at this point. I think it’s because I’m relieved that the cancer has been cut out of me. Pre op I honestly thought I’d be an emotional mess post op so I’ve surprised myself. I’ve shed a few tears but much less than I thought I would at this stage.

Going into surgery I was also surprisingly calm. I had to wait for an hour after leaving my room in the pre op area and I just breathed and rested my eyelids in between visits from the surgeon, anesthetist and nurses. I even ended up walking to the operating room and jumping up on the operating table myself as all the orderlies were busy. The anesthetist told me before surgery that because I’m allergic to egg whites he couldn’t use the normal anesthetic because it contains egg white proteins so he would have to keep me asleep with gas. He said this would probably make me more nauseous afterwards. He also had trouble finding a vein for the drip to sedate me. They kept collapsing as I was dehydrated and the needle must have been scaring them away. That part was painful and reaffirmed my decision to have a portacath during chemo treatment instead of trying to find veins in my right arm all the time. The portacath will be inserted under the collarbone and stay there for the duration of treatment. This will happen under general anesthetic. My left arm can never be used for taking blood or blood pressure eve again. I also have to be careful with it in the sun and watching for infections. Having no lymph nodes under the left arm may cause life long issues and I’ll have to be very careful with it not just now but always.

Back to the op. 3rd time lucky with the drip on the inside of the elbow which is the worst spot for it really as I can’t bend my arm. Soon after he got that in I was out to it. In la la land with my good friend Cheree who was having a hernia op yesterday. We thought of each other as we went to sleep. I remember waking in recovery and being given morphine for the pain. That’s some strong stuff! Wow. I also remember being wheeled back to my room and being given anti nausea medicine a couple of times. I felt pretty horrible from all the gas. Bloody egg white allergy!

I dozed off and on all afternoon having mini conversations with mum and Derek when required with eyes shut. Evening arrives and I thought I might like to try my dinner. I looked at the soup and thought that apple juice might be safer. Lucky because the nausea was still hanging about and did so for most of the evening until a nurse made my drink some frothy medicine really quick which also came back up. That seemed to do the trick though and I felt much better afterwards. I even managed to keep some fruit down. I slept pretty well waking up at 5am starving. Some toast and water and I was back to feeling almost human again. I’ve continued to eat and drink really well all day and they’ve taken my drip out (but have left the canular in just in case they need to pop the drip back on).

I saw my surgeon this morning and she also spoke to mum and Derek yesterday after surgery. She felt very confident that she got clear margins from what she removed. She also took the three levels of the lymph nodes. Unfortunately she couldn’t locate the internal mammary node but this area is going to be radiated anyway. She only put one drain in which will continue draining fluid from the area. It’s pretty uncomfortable and a little painful at times so I’ll look forward to having this out in 7-10 days if not sooner. The whole area is swollen and numb in places. I have looked at my chest and felt a bit numb myself like I didn’t know what I should be feeling. I’m sure the tears will come with time. At the moment I just want to focus on feeling better physically. I’ll have to deal with the emotional side at a later date.

Rosie and Polly also came to visit today. I was so happy to see them but sad at the same time that I couldn’t give them great big squeezes. Here’s a pic of the three of us:

I’ll leave it there as my dinner has arrived and my appetite has returned to normal. Tomorrow is another day and I’m sure I’ll feel even better than I did today. Thanks again for all the words of support and encouragement. It’s all helping at this extremely difficult time.

Just thought I’d pop up a quick post before surgery today to let you all know that the CT and bone scans came back as all clear.  This means the cancer hasn’t spread which is such a relief.  As soon as I found this out my anxiety abatted and I’ve been feeling pretty cool calm and collected since.  Even this morning, I’m as cool as a cucumber.  I thought I’d be a nervous wreck but I think I’m just relieved that this day has finally arrived so I can start getting better.  It’s strange but I’m looking forward to having the surgery to get this cancer out of me.  It’s a shame I have to lose a boob in the process but it really is for the best.  I was thinking a couple of days ago that at least it’s not an arm or a leg that I’m losing.  I can’t really imagine living without one of these.  It would be a huge thing to overcome physically and emotionally.  At least with losing a breast, I really just have to overcome my own body issues.   I’ve been pretty lucky to this point in my life with never having had any body issue in the past.  I’ve always been relatively happy in my body.  Hopefully I can overcome this hurdle and still love myself for who I am both inside and out.

Yesterday I had the lymphoscintigraphy to find the sentinal node (this was a 2.5 hour test).  They injected 5 needles of radioisotope (hello radioactive woman) into and around my tumour in the breast and told me to rub it to get the radioactive material moving around  before scanning the area.  The idea is that the radioisotope first drains to the first lymph node affected by the cancer.  This is useful if they are planning to do a sentinal node biopsy which is when they take only some of the lymph nodes under the arm, testing them and reducing the need to do the full dissection unnecessarily.  This doesn’t apply to me as they already know that at least one lymph node under the arm is cancerous with other looking suspicious under ultrasound.  They’ll be doing a full anxillary lymph node dissection.  The reason they decided to do this further test on me is to try and find the internal mammary node under my ribs that has shown as being swollen in the MRI.  The nuclear medicine guy couldn’t find it yesterday but I’ll still be radioactive woman during surgery and they’ll use some kind of machine to follow the radioisotope in my system to try and find it.  Hopefully K can remove it without any problems.

K referred me onto a physiotherapist who specialises in lymphodemia and cancer and she squeezed me in at 6pm last night when I rang her at 5:30.  That was nice of her!  I’ll call her R.  R said she is very passionate about her job and really prefers to see her patients before surgery.  She took measurements for an arm stocking in case one is required (it probably will be as I’m hoping to fly home all going well).  She also ran through the exercises I’ll need to do after surgery to get my lymph system working properly again.  This is all very important to keep lymphodemia at bay.  I’ll go and see her again once my drains are out.

I enjoyed shopping with Renae yesterday and then some family time last night.  It was great to see Derek and Rosie after being away from them for a couple of days.  They had a good trip down.  It was hard not to kiss and cuddle Rosie over and over and over but the radiologist said to refrain from too much contact with the girls due to my radioactivity.  Scary that this stuff is coursing through my body!

Not much else to write at this stage apart from the fact that I’m hungry and thirsty and looking forward to a meal and cuppa later today  The kitchen staff have dropped off my menus for the next couple of days to choose what I want to eat.  That’s just cruel when I’m fasting!  If I’m up to it I’ll be having chicken and hokkien noodles tonight plus soup.  Tomorrow I’ll be having tempura barramundi with potato wedges and salad for lunch and primavera pasta for dinner.  Yum!  Lots of good choices, just hope I’m up to eating.  Derek and I are just waiting now.  Mum and Aunty Marie are at home with the girls.  I’m actually having surgery at North West Private Hospital rather than the Wesley as my surgeon does surgery here once a week and it’s closer to my Aunty’s house, just 10 mins up the road in fact which is ideal.  I’m looking forward to a bit of a rest after surgery.  I think I deserve it.

Radioactive Woman

On Monday my Mum, Polly & I flew down to Brisbane to stay with my Aunty Marie who loves doating on her loved ones.  We’ll be very comfortable here for the next couple of weeks, which makes me happy.  Aunty Marie cooked us scones when we first arrived, a yummy lamb salad last night and lasange tonight.  Eating yummy food has always made me feel better not just physically but also emotionally.  Derek found out early on that the quickest way to my heart was through my stomach.

Derek and Rosie are on a road trip driving down to Brisbane.  Hopefully they make it here calm and serene, although it’s more likely Derek will be slightly stressed and Rosie will be hyper active.  I won’t be here when they arrive as I have plans with some radioactive material and another scanning machine.  I’ve had to cancel my afternoon of pampering so I can once again become radioactive woman.  I am going to the shops for some retail therapy in the morning though.  More about radioactive woman shortly.

So today was spent at the Wesley Hospital again.  I saw the breast surgeon (I’m going to call her K) this morning and she confirmed that the lymph node under my arm is cancerous as well and there are a few other suspicious looking nodes under the arm (this is from the ultrasound and FNA done on Friday).  Because of this she is going to remove all of the lymph nodes under the arm, levels 1, 2 & 3.  Before having the FNA done she said she would most likely just need to remove levels 1 & 2 and leave level 3 in there.  There is a higher risk of lymphodemia when removing all of them but there’s also a higher risk of the cancer returning if they’re left in there.  Once again it’s a no brainer, take the little suckers out.

K also referred me onto a number of specialists to add to my team of medical professionals. A medical oncologist, radiation oncologist and a physiotherapist who specialises in lymphodemia and cancer treatment.  I’m going to try to see each of them before I head home in a couple of weeks.  I’ll see the medical oncologist once my pathology results are in (hopefully by next Tuesday).  It’s likely I’ll have to come back down for the first chemo treatment with her but then I’m hoping most(or the rest)  of the treatments can take place in Rocky.  Once again, I’d prefer to see someone more qualified in my specific problem, rather than settling for someone just because they’re close to home.  There are no oncologists located in Rocky, just visiting ones.  The medical oncologist I’ll see down here is doing a clinical trial for patients with HER2 positive tumours and my breast surgeon is sending all her HER2 positive patients to this oncologist.  It will be good to find out more about it anyway once resutls are in.  I also found out tonight that she was my Aunty Lyn’s oncologist and Aunty Marie tells me that I’ll love her.

K has spoken to the radiation oncologist in relation to my results so far and also about reconstruction at the time of mastectomy.  The radiation oncologist said it’s definitely much harder to do radiation on anything but a flat chest.  I assured her that I’m happy with my decision to wait until after treatment for the reconstruction.  K thought it was a good idea to have a chat to her while I’m down here anyway to find out what I can expect.  I’ll wait until after results are in.

K explained what I can expect before during and after surgery.  I have to fast from midnight Wednesday until around 10am (hopefully surgery isn’t much later than this, I’m second on her list for the day).  This is going to be extremely difficult for me.  I won’t even be able to drink water!  I can’t believe I’m sitting here complaining about not being able to eat or drink water with what I’m going through.  Talk about priorities!  Surgery should last a couple of hours and pain shouldn’t be too bad upon waking.  It’s more likely I’ll feel numb around the surgery area, including the armpit (which could be permanent).  I’ll have two drains in.  This means a couple of bags with tubes under my arms to drain off fluid from the surgery site. Yukky.  I am not looking forward to this bit.  I’ll be in hospital for only two days.  The first drain will come out whilst in hospital, I’ll come back to Aunty Marie’s with the second one still in for 7-10 days.  It’ll be nice to be here rather than in hospital but I am concerned about what Rosie will make of the drain.  She not so gentle with me a lot of the time…  She’ll have lots of distractions so hopefully there’ll be no grabbing and pulling of drain bag and tubes.  I’ve been given a lovely handmade handbag to put it all in to keep them hiddenn.  The breast care nurses at the Kim Walters Choices program at the Wesley gave me a bag of goodies which includes a trendy drain bag, a jelly bean pillow to put under my arm when sitting, sleeping, reading, being for the first couple of weeks plus a temporary prosthesis which I can stuff my mastectomy bras with.  They’ll also organise a free pocketed bra for me via BCNA and Berlei.  Anyway, they’ve been great at Choices and I’d love to say at this point that if anyone was thinking of sending flowers, I’d love you to make a donation to the Kim Walters Choice Program in place of anything like this.  Or any cancer charity for that matter.  Just let me know you’ve done this and that will brigthen my day as much as flowers, if not more.

After speaking to the radiation oncologist K decided she’ll definitely be trying to get to the internal mammory lymph node which looks suspicious and sits underneath my ribs.  In order to do this there is now another test I need to have done which will happen on Wednesday.  I’m writing this Tuesday night so it’s likely by the time I post this it will be Wednesday.  The test involves injecting radioisotope into me to try and find this naughty little node.  They take photos and pin point it during this 2-3 hour procedure.  If they find it then blue die will be injected during surgery so K can find it and pull the little sucker out, hoefully without knicking my lung, which it sits against.  The blue die will make my wees and poos green plus make me look grey for a day. That will be a bit strange!  It sounds like the radiation oncologist will most likely want to radiate there no matter what but we can only wait and see at this stage.

K gave me a prescription for some tablets to help dry my milk up as I’m still quite engorged.  My last feed with Polly was yesterday afternoon although at the time I didn’t realise it.  The plan was to give Polly her last feed tonight (Tuesday), take the tablets and then also pump lefty before surgery.  Unfortunately that plan was foiled by the evil radiologist who has banned me from breastfeeding as radioactive woman (insert evil laugh here).

After seeing K today I went to have blood taken for numerous tests then onto have a CT scan plus a bone scan.  I think in my last post I said the bone scan was to check my bone density.  I was wrong.  It was actually to check to see if the cancer has spread to my bones.  The CT scan was of my chest, abdomen and pelvis which was also to see if the cancer has spread anywhere in these regions.  Currently awaiting results which should arrive on Wednesday.  The bone scan involves being injected with radioisotope, letting it run through my body for 2 hours and then going back for a 30 minute scan (I even had a little nap while they were taking pictures of me, they make you very comfortable).  After they injected me with radioactive liquid, they also injected me with a contrast for the CT scan. The contrast made me feel like I’d wet myself plus left a horrible metallic taste in my mouth.  The CT machine then proceeded to take pictures of my warmed up chest, abs and pelvis.  What a strange sensation it was – the warmth of the contrast running through my torso.  These tests were a breeze, especially after the MRI where I had to lay very still for 45 mins.  I’d say I’ll become very familiar with these scans over the next 5 years.  Not sure what to expect for the one tomorrow (on Wednesday) but hoping it’s also a breeze.

It’s Wednesday morning and I’ll pop this up now and report back as radioactive woman later.

I’m like a yoyo, up and down, up and down. This is definitely the case emotionally but I’ve also been down to Brisbane and back again and I’m heading back down again on Monday for the start of a very long week. A week I expect will be the hardest of my life.

Just looking back on my week since my last post, there’s been a lot of information still coming my way. It’s like a constant stream and sometimes I just need to turn the tap off and wrap myself up in my cocoon (or bubble as Beck would put it), my safe place where this isn’t happening to me. So on Tuesday morning I went to see a Cancer Council Psychologist. This was a helpful process for me and I’ve already made my next appointment with her for after my surgery. She also referred me onto some other resources and events happening that I can attend to help make my life a bit easier and more enjoyable. There are Look Good, Feel Better events which help you deal with the appearance related side-effects caused by treatments like chemotherapy and radiation such as hair loss and changes to the skin. I’ll also be attending a Cancer Council run Living with Mindfulness workshop which runs for 8 weeks from mid October. The Cancer Council also has a program where they can match me to another woman who has been through what I’m going through now. I already have a couple of contacts for this so may or may not make use of it. There are also local support groups in Rocky and Yeppoon. Unfortunately both seem to be full of mainly older ladies and this doesn’t really appeal to me. I’d prefer to mix with women around my own age who either have young children or are yet to start a family. I just feel we’d have more in common and reading stories of other young women going through breast cancer, it seems to be something that comes up regularly, the lack of young women support groups in regional areas. Maybe I’ll start one myself once I get through the surgery stage. I’ve already asked the local breast care nurse to pass my details onto anyone else in the area who’s in my age group.

On Tuesday afternoon a breast care nurse did a home visit and I was able to pick her brain about so many things that will happen over the course of the next year or so. It was invaluable and I’d feel comfortable calling her with any questions along the way. We talked about the surgery, what I can expect afterwards, possible side effects from post op treatments, length and timing of treatments, that kind of thing. In relation to treatment though, I won’t know exactly what’s going to happen until after surgery, once the pathology report has gone to the oncologist. One thing that nearly every medical professional I’ve seen has said to me is that I will be hit extra hard with post op treatment as I’m young and have everything to live for. This is obviously very scary but again, I’m just trying to focus on the next step which I’ll get to soon.

As a yoyo I was up after such positive meetings with the psychologist and breast care nurse on Tuesday. On Wednesday I had a down day, which is a shame as it was meant to be a fun day spent as a family. We started the day with a nice breakfast, mine consisted of egg yolk scrambled eggs, now that I’m allergic to egg whites. 30 mins after breakfast I was going down hill quickly. Egg yolks still contain parts of the egg white and this was enough to make me feel the sickest I have yet from this allergy. Maybe it’s because I stopped eating them for a while, now I’m even more sensitive to them. I spent the morning in bed feeling sorry for myself when I should have been at the park with Derek, Rosie & Polly. I started feeling better when the girls went to bed so decided to head to the shops for a change of scenery. As soon as I got there I realised it wasn’t a good idea. I was on edge and wired, feeling like I’d drunk 5 cups of coffee. It was a mix of adrenaline and anxiety from being out in public. Very odd and very unpleasant. As has been the case over the last couple of weeks, I’ve found it extremely difficult to make the smallest of decisions, like what to buy from the shops for dinner, which recordable book to buy Rosie for when I’m in hospital, whether to grab the groceries we needed or whether to run home for safety. I had to go to the bathroom, take some deep breathes and make myself slow down. I did what I needed to in the end but when I got home the chick from Lenards forgot to put my chicken parmigiana into the bag, so stressing over what to have for dinner was a waste of time anyway.

Derek went to work on Thursday, Rosie went to daycare and I pottered around packing and organising stuff for our trip to Brisbane the following day. Jo popped in for a cuppa, bun still in the oven at that stage…

Friday, the big day. Rosie stayed with Derek’s parents and we headed to Brisbane for a day of getting my boobs out to see what would happen to them (and me) from here. After having two children, breastfeeding and getting my boobs out regularly over the last couple of weeks, I no longer look at them as the sexual objects they were in my 20s. To the 30s me, they are a force of giving life and love. This is why it will be so difficult to part with one of them because I feel that I literally give life and love via my breasts, to Polly at least and to Rosie for the first 16 months of her life. Once again I well up thinking about this loss and my ability to give my love to Polly in this way. And it’s not just the milk itself (of which mine has been called double cream milk by many a child health nurse), it’s the act of breastfeeding that I will grieve for in a few short days, and have been grieving for since finding out I could not continue to do so. I know I have to let go though because not to do so would be detrimental to my mental and emotional health not just in the short term but also in the long term. What a relationship I’ve had with my boobs since they arrived in high school, one that most, if not all, woman take for granted until the day comes when someone wants to remove it in order to save their life. I know which I’d rather, my life any day of the week, so it’s really no contest in the end.

Okay, that’s enough rambling about my breasts in that fashion, back to the serious stuff. So firstly we caught up with Derek’s family member who had pointed us to some great options in Brisbane. Then onto the breast surgeon where she gave me a very thorough examination and we discussed my options. Unfortunately, a breast reconstruction at the same time as the mastectomy isn’t recommended for me. Firstly, there is a risk of complications soon after the surgery from the reconstruction side of things. Secondly, there is a delayed risk of infection due to the implant once chemo has started (which will start approx. 3 weeks after surgery). Thirdly, there is a higher risk of infection for me due to breastfeeding. If my body rejected the implant and an infection followed I would be in hospital for weeks and treatment would have to be further delayed. The implant may also have to be removed which would mean I would be worse off then when I started all of this. I just couldn’t put myself and my family through all of that so have chosen health over outer beauty. It was a no brainer really.

It wasn’t a hard decision to make but there are definite down sides to waiting for the rebuilding of my body. I’ll jump forward to my meeting with the plastic surgeon later in the day. Even though it was the breast surgeon’s recommendation to wait until after treatment to move forward with the reconstruction, from the plastic surgeon’s point of view, he felt it would be better to do the reconstruction at the same time as the mastectomy. This was purely from an aesthetic point of view. His concern was the high chance of me also needing radiation therapy after with the chemo. My options will be very limited if that is the case. He explained it to me like this: My only option is an implant reconstruction due to my lack of tissue to steal from elsewhere on my body. This is generally called a TRAMS flap reconstruction where they take tissue from the tummy muscles and make a more natural looking boob from it. There are also similar reconstructions where they take tissue from the back or butt. This type of reconstruction could never be done at the time of the mastectomy as recovery can take months and would delay treatment. So implant it is, a smaller amount of tissue can be taken from my back to add to the implant to make it look a bit more natural. This would leave a scar on my back and would only be done if reconstruction was delayed until after treatment. The only option available at the time of mastectomy is implant only. What would happen is a tissue expander would be inserted and pumped up over a number of months, stretching the skin, until it was the ideal size and treatment had been concluded. Another operation would be done six months after finishing treatment to remove the tissue expander and insert the permanent implant. If I need radiation after chemo then the radiation therapy will most likely leave me with a deformed breast as the skin would most likely tighten around the implant. An attempt could be made to fix it up but not guaranteed. Personally I think that this would be worse than no breast at all as the tightness would feel awful and look horrible. He showed us some pictures and they weren’t pretty. So even with all of that in mind he still said that doing the reconstruction at the time of mastectomy is better than leaving it until after radiation. This is because if I leave it until after treatment and I’ve had radiation on a flat chest, it will be quite hard to stretch the skin after radiation therapy. This is when I’d need to move tissue/muscle from my back to the front for bulk and a more natural look. Either way the radiation will leave me with a less than desirable result no matter when I have the reconstruction done. It’s a loss loss where that’s concerned which is hard to swallow. If I don’t have radiation, then that’s a big win in more ways than one, so that’s what I’m really hoping for at this stage. This was the biggest let down of the day on Friday and I felt quite flat after finding out all of this information. The flat pun not intended initially but that’s pretty funny!

Back to my meeting with the breast surgeon. She was great. I felt very comfortable with her. She explained everything from the start even though we’d heard most of it already. Mastectomy still the only option and the nipple cannot be saved due to the DCIS being very close to it. She felt it was worthwhile to take a sample from the swollen lymph node under my armpit to make sure it was cancerous. She felt the chances were high but better to know as much as possible before the surgery. If it’s not cancerous maybe I won’t need a full lymph node axillary dissection, which is when they remove virtually all of the nodes under the arm. This can lead to other issues including lymphedema which I’d be stuck with for the rest of my life. I popped down to the breast clinic at the Wesley for an FNA test that afternoon and the breast surgeon will have the results early this week. There is also a slightly swollen internal mammary lymph node under my ribs. This could simply be from the numerous tests I’ve had since April or it could also be cancerous. She will try her best to remove it during surgery but it’s a hard one to get to apparently. She’ll need to use some sort of blue die to find it. If it’s not cancerous that will hopefully reduce my chances of needing radiation but if it is or if she can’t get to it then it’s more likely I will need radiation. The surgeon in Rocky wasn’t going to chase this lymph node and said treatment would kill anything in there. He didn’t say which type of treatment but I’m guessing now it would have been radiation although at the time I assumed the chemo. Fingers crossed she can find it during surgery.

The breast surgeon also went into detail of the type of incision she normally does depending on whether a reconstruction is on the cards. If it was an elderly lady who wasn’t going to have a reconstructed, the scar would be longer and this means less skin is left. For me she’s going to do a medium size incision and leave a bit more skin so that it’s easier to stretch out for a replacement boob. She’d love to do an even smaller one for me but leaving a flap of skin isn’t ideal. If necessary, the lymph nodes will also be removed from the same incision so I won’t have two separate scars. I’m preparing myself for a full lymph node axillary dissection as am assuming the node under the arm is cancerous although it could also be a reaction from the tests I had done back in April.

Um, what else was discussed… Well, I made the decision whilst seeing her that I would definitely be having the operation in Brisbane with her. We discussed other things that needed to be done. I’m seeing her for a pre surgery appointment on Tuesday morning at 9am. Then I’ll go in for a CT scan and bone scan. The CT scan will check my chest, abdomen and pelvic region to see if the cancer has spread anywhere else. Waiting to hear the results from this test will be excruciating. If it has spread then the surgery will be cancelled and I’ll have to start chemo immediately. This wasn’t really discussed any further and I’m trying hard not to even think about this as a possible outcome. We’ll cross that very scary bridge if we come to it. The bone scan is done to check my bone density. I’ll most likely go through a temporary (or possibly permanent) early menopause and this can cause a higher risk of osteoporosis. They just need to see what my bone density is like before starting treatment and I’m guessing will monitor it along the way or at the end to see if I need additional treatment for this such as calcium supplements or weight bearing exercise.

So that’s Tuesday. Wednesday I’m having some pampering and a bit of a girly day with my good friend Renae. It will be good to keep my mind off of the next day. Thursday – surgery, and as my lovely Aunty Gail put it, the start of the road to recovery. What a great way to look at it.

I was also meant to meet up with another breast care nurse at the Wesley from the Kim Walters Choice program but she was called away so I’m hoping to meet her on Tuesday. She’s going to give me a temporary prosthesis (a piece of foam that will become my replacement boob for a while), a mastectomy bra for recovering from surgery and a pillow to pop under my arm for comfort whilst sleeping. I’ve also started looking into more permanent prostheses and mastectomy bras. We’re lucky enough to have a shop in Rocky where I can be fitted for these items. I’ll leave this until after I’ve healed from my surgery but hopefully before treatment starts. My best girl friends Beck and Amelia will be here around that time so I’m hoping they can help make light of the situation. I’m also putting the call out to anyone who thinks they might be able to sew some pockets into bras for me as I have a feeling the mastectomy bras won’t be my thing. The pocket is required to hold the silicone prosthesis in place. The cost of a silicone prosthesis is nearly $400! Lucky I can claim this back on Medicare. That’s one expensive chicken fillet!

I’ll leave it there. Once again it’s late and I should be in bed. I think it’s going to be very difficult to sleep as surgery gets closer. I slept a lot today as I was exhausted from the trip down to Brisbane. I wasn’t the only one. Derek worked out that Polly slept over 20 hours out of 24 hours at around 2:30 this afternoon. Friday and Saturday really took it out of her. She handled it all amazingly well at the time though and wasn’t any trouble at all. Oh, we also sat Rosie down this afternoon and started explaining to her what was going to happen this week. My mum, Polly and I are flying down to Brisbane tomorrow. Rosie will go to daycare tomorrow and Tuesday to keep some normality in her little life. Derek will then pick her up on Tuesday afternoon and they’ll start driving to Brisbane from there, stopping overnight along the way and starting up again on Wednesday morning. With the help from a book from the Cancer Council, we explained to her that I have some bad lumps in my boob and the Dr needs to take them away and that I’ll only have one boob after they do that. She was fine and hasn’t even mentioned it again. I think after the surgery on Thursday we’ll have to explain it again. We haven’t yet explained what is likely to happen during chemo as I thought it best to take it one step at a time and wait until we know the possible and probable side effects of the type of chemo they end up giving me. It’s no longer a one fits all treatment and there are many chemo agents available, depending on the type and grade of tumour.

My beautiful girls:

Thanks to everyone who has been mkeeping in touch. Even if I don’t respond please know that I love getting your messages and to keep them coming this week as I’ll need them now more than ever. One more thing that makes me very sad but also very thankful that I’ve been able to help a friend in this way. A friend I worked with years ago went and had her breasts checked at my request in a previous post and after some tests has found cancer in one of her breasts. I just can’t believe it. Never did I think that me asking my female friends to check their breasts would result in someone else being diagnosed with cancer. 1 in 9 woman. Derek and I were discussing the stats the other night and as the years go on and we grow older, the chances of us knowing other women who will go through this are particularly high. Because we’ll have gone through it before them, we know we’ll be able to help in ways that will hopefully be invaluable to them. Of course, we don’t wish this upon anyone but facts are facts and it’s obvious that breast cancer has affected so many people as we’ve been bombarded with stories about others who have been affected by this terrible disease. Thankfully most of them are about these women surviving breast cancer. I personally don’t want to hear the other side to this so please don’t share them with me or my family.

Okay, I really am finishing it up there. Thanks to Beck for gathering stories and memories from many friends and families and compiling them into a document for me (which I’ve printed out and will be taking to hospital with me) plus creating this video for me. It made me laugh and cry and I absolutely loved it. Thanks to everyone who contributed also. Beck said if anyone else wanted to contribute to let her know. Get in touch with me and I’ll pass her details onto you by email. Check the video out on You Tube here:

To end on a very positive note, we have a new addition to the Hower family! Harry Ted Hower was born on Friday after a speedy labour. Jo and Toby are very much in love with their gorgeous little man and we can’t wait for our kids to grow up together.

Friday, Saturday and Sunday provided a bit of normality. We took the girls to the park, I went for a massage, a walk on the beach with my sis in law Jo (who’s going to have her first baby any day now), markets and lunch at Emu Park, pottering around the house, spending time with my beautiful girls and in between all of that further educating myself about what’s to come. Plus having little bursts of feeling totally overwhelmed, having a good old cry, wanting to crawl into bed for a week – then getting back up, brushing myself off and getting on with things again.  The normality has definitely helped me not get too far ahead of myself.  I’m trying to focus on the next immediate decision that needs to be made and leave the rest in the futre where it belongs.

It’s funny because over the last year I’ve learnt a bit about mindfulness and living in the present moment.  I’ve read about it, meditated here and there, tried to practice mindfulness in my day to day life and attended a mindfulness & meditation weekend whilst pregnant with Polly earlier this year over on North Keppel. It’s serving me well at the moment.

So, I’ve been looking into the option of reconstruction surgery at the same time as my mastectomy.  I do feel I’d cope better emotionally and mentally after surgery if I could have a new boob built sooner rather than later.  There are two options, first is TRAMS flap which means they take bits from other parts of my body and make a boob out of them.  How cool is that!  Unfortunately (and fortunately) this isn’t really an option due to my lack of excess tissue 😉 Second option, an implant.  Initially a tissue expander would be inserted and pumped up over time, then after all of my post op treatment I would go back for surgery to remove the tissue expander and insert the implant.  Of course there is always the third option of having one boob for life and wearing a prosthetic breast but I’m young and I personally wouldn’t even consider this as an option long term.  Some of you might be thinking this is “TMI” (too much information), but I’m guessing there will be some of you who are curious about what happens after it comes off.

On Friday Derek, Polly and I will head down to the big smoke, Brisbane, to see a breast surgeon and plastic & reconstruction surgeon.  It’s not possible to get a reconstruction here in Rocky and I really need to work through all my options before deciding what happens next plus when and where. At this stage I don’t know whether I’m suitable for a reconstruction but I’ll find out on Friday and then can decide from there.  It’s pretty much a given that I’ll be having chemo but they won’t know for sure about radiation therapy until after my surgery and the pathology has been done.  There is already one lymph node affected by the cancer and if there are 4 or more lymph node affected then it’s likely I’ll also have to have radiation therapy.  It’s not ideal to have radiation on an implant so if they do think it’s very possible I’ll have radiation, then it’s unlikely I’ll be suitable for a reconstruction at the same time as the mastectomy.  If that’s the case I’ll just have to deal with it.  I am already preparing myself for that happening but it’s good to go through the motions so that I’ve covered all bases.  I would be very disappointed in myself if I didn’t explore all of my options before my surgery.

Even if I don’t have reconstruction surgery with the mastectomy, the reconstruction surgeon likes to see his patients before their mastectomy and I can certainly see plenty of benefits to that so the trip won’t be a wasted one.  I’m also seeing a breast surgeon in Brisbane and may end up having surgery down there even without the reconstruction.  The surgeon in Rocky is a general surgeon and I’m not doubting his ability but it makes sense to at least talk to a surgeon who specialises in breast surgery.  If I have the mastectomy in Rocky, it will be on Monday 27 August.  If I have just the mastectomy in Brisbane it will be either Thursday or Friday or next week.  If I have the mastectomy and reconstruction in Brisbane then it will be as soon as both surgeons are available together.  They like to do breast cancer surgery as a matter of urgency so I’m guessing it won’t be too much later than my initial surgery date.

So my head has been in a whirl today trying to sort through all of this.  I was on the phone nearly all day in between tending to Polly (Derek was at work for an important meeting and Rosie at daycare).  Apart from numerous calls to all the doctors’ rooms, I also spoke to two breast care nurses, one from the Kim Walters Choices Program and one from Rocky who is coming to visit me at home tomorrow.  Great service!  Both women were fantastic and offered support before, during and after treatment.  I’ll be seeing the nurse from Choices when I’m down in Brisbane on Friday.  From what I’ve heard, the breast care nurses will be my go to people for practical and emotional support throughout this whole “journey”.

I’ve also made an appointment with the Cancer Council Psychologist, I’m seeing her in Rocky tomorrow.  I thought about leaving this bit out of the blog but then I thought better of it.  I’m putting a lot out there and it just didn’t feel right to pretend that I’m not worried about my mental state.  I am.  I’m very concerned about how I’ll get through all of this without being able to unload to an outsider.  It’s a free service and one which I may come to rely upon at some stage.  What can I say, I’m a woman!  Talking through things helps me feel better.

So I’m feeling pretty good about most things at this point.  As good as one can when faced with this situation.  Polly is taking a bottle well and I’m still considering donor milk but only with proper screening (blood tests and reassurance of a healthy diet).  The first step was her taking a bottle well, she’s even taken a couple from me.  I was quite worried about her rejecting the bottle from me and expecting the breast.  She’s been pretty good about it but is still having breastfeeds so I can stay comfortable in the process.  I think she’ll be fine once weaned totally to a bottle, it’ll be me who will be upset about it.  Time will heal though.

I have a bit on tomorrow but not much for Wednesday and Thursday.  Hopefully Jo has her baby as that will take my mind of off things until Friday.  We’ll do some fun stuff with Rosie on Wednesday and Derek and I might go to the Johnny Cash tribute show with Tex Perkins on Thursday night plus out for dinner first.  It’s nice to have little things to look forward to…