Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: recovery (page 3 of 3)

A New Year dawns

September 26, 2014 / / 0 Comments

sunrise & jettyIt’s the 31st of December 2103. Everyone except me goes to the beach and I go to my sister Gerri’s. We just hang out and talk and spend time it is really nice, we also go to lunch with some really close friends of hers. I just did not want to go to the beach with my wound still being so sore, the heat is just not compatible with how I feel, and I certainly wont be going near the water just yet.

So I have a lovely day with my sister Gerri, she is a cancer warrior herself and is an inspiration to me. She has had a double mastectomy and has not had reconstruction. We laugh together about the down side to prosthetics. No matter what you do or how you do it they wander. I am sure when I wear mine it has a goal to be a shoulder pad, it always works its way up my chest to the wrong place.

My sister laughs and talks about how hers usually work themselves together into the middle of her chest, still not a good look! At least we can laugh hey!

New Years Eve comes and goes; it feels so surreal. I’ve never been a real fan of NYE, I am the sort of person that believes when you need to change just do it, don’t wait until a new year comes along think of all the time you’ve wasted!

We spend New Years Eve with my family. The kids have a ball, the adults sit and drink, reminisce, laugh and then as soon as midnight strikes we head home completely stuffed!!! I just have no energy at the moment.

I wake at 3am in our friends house having the most incredible night sweat that I can hardly breathe. I get up; go to the loo, splash water on my face and then curl up in the lounge room where it is a little cooler. They have air con but it is ducted and they don’t have it on so I don’t want to turn it on. I lay out in the dark lounge room for hours until I can go back to bed.

Eventually morning comes and Marc wakes up. He reminds me that I need to start taking the Dex (dexamphetamine) in preparation  for the chemo. It hits me, “SHIT chemo starts in 2 days.” Oh man, it didn’t feel real until right now.

I take the dex and a few other supplements I need to begin to take and I am feeling really emotional, like “stop I want to get off, but I can’t. I go and have a cry our friend comes in and spends time with me. She reminds me that no matter what – my mind cannot be touched. My body can be cut and poisoned, but my mind is mine. I can spend time with God, I can focus on whatever I choose too and it will be ok. What a powerful reminder!

We decide to head back home today in the afternoon so we have two sleeps at home before treatment starts. The trip home is peaceful; we are both in our own heads thinking, wondering, “what if” ing.  It is nice to be home in our own bed.  There is some type of unspoken security about your own bed.

 

 

Life begins to move on

September 3, 2014 / / 0 Comments

road w quote

After the Oncologist, my big sister arrives for a bit over a week. Her and her Husband fly in from interstate. This trip was planned before the diagnosis; we don’t get to see each other often so I did not wish to change it.

My big sister has many health problems of her own, she has been to hell and back and this continues on a daily basis. She is resilient and takes each day as it comes. Her husband is an amazing support and they have the most wonderful relationship. They have been married and divorced before and finally found each other. It is so lovely to see how they do married life together.

It is hard for all of my sisters having me diagnosed with breast cancer I don’t think anyone expected the youngest sister to be diagnosed. It brings up all of the questions around genetics and family history. It makes each of them think, “will it happen to me, when will my body defy me?” We don’t have great genes honestly. Cancer, heart disease, weird blood disorders. But in our favour we are strong and resilient.

We spend lots of time sitting about talking and reminiscing. My sister closest in age to me stays for the week to see her big sister too, and to help out me after surgery. So we laugh, we cry, we talk, we disagree, it is a big week.

It has been an interesting journey for my big sister as her illness is obvious as she is on oxygen 24 hours per day. She also needs to use a walker or wheel chair to be mobile as she is so weak and is so much pain. She cannot avoid but explain what is going on with her health.

However, for the moment I have blessed anonymity, which I am treasuring. Soon enough I will be ‘bald, barren and boobless’ and obviously look like something is not right so I will have ‘the looks’, the inevitable questions. So for now I am not keen to even bring up my health with people outside the inner circle.

As we catch up with some distant family members over the week, my sister talks about her health and is quite puzzled when I don’t bring mine up. Again it’s me making the most of this window of opportunity when my health does not need to be the foremost topic of conversation.

Particularly when you don’t know how different people respond. Some are supportive and encouraging (excellent!), while others can be fear mongering, can blame you and then of course there’s those who open with “oh yeah I knew someone who died from that last month.” That’s always a helpful conversation. No I don’t have enough of my own fear and doubts that I wrestle with every moment, please give me more!  Once I explain to my big sister why I don’t wish to tell people she understands, again different people different journey.

It’s a full week, my second oldest sister visits from the Hunter Valley, which is lovely. I haven’t seen her since the mastectomy. She is my sister who has also had Breast cancer, so I feel like she understands so much more. She’s been there, she knows the “what if’s” the mind games we play, the pain, the body image issues, the grieving for normality, the realisation of ones own mortality.

So it has been a big week, I am slowly recovering, the pain is lessening, I still cannot wear a bra with my soft form prosthesis for long. It’s just too painful. If we go out in public and I feel the need to wear a bra, I almost rip my bra off when I get home. Oh the sweet relief when I do that.

It makes me angry that I feel the need to conform and wear my prosthesis in public. But then again without it I get the looks and questions. I don’t want to have to deal with that, I am still coming to terms with what this means for me. I am sure it will all become easier in time.

 

My first post surgery check

August 25, 2014 / / 0 Comments

bottled_up_emotions_by_photog_roadThursday 5th December

I am due for my post surgical review with my breast surgeon today. The warm caring man pre surgery seems to be MIA today and I am faced with a very curt business like man, who doesn’t seem to give a crap.

He looks at drain says “it’s ok but you need antibiotics”. He says “You are healing well and your pathology was inconclusive, there was some lymph node involvement but we have decided to take a conservative approach” – This does not sit well with me, so the cancer travelled?  How long do I wait?  All of these fear driven thoughts are invading my mind with such speed I can’t stop them.  He says “best case scenario, treatment will just be tablet, and they need to shut down my ovaries”.  Oh cool, that sounds hunky dory.  Awesome, what was I afraid of……

The completely frustrating thing is I know that this means.  This means Tamoxifen and my Mum was on this, each time she stopped taking it, on doctors orders her cancer would come back stronger than ever….   This drug frightens the crap out of me. I hated this drug for years.  Each time my Mum’s cancer came back with a vengeance. I also know that this means ”hello menopause” and this is scary for me too, I am 41, I’m not ready for this. But from his mouth, “just take a pill you’ll be fine.”  He does not even mention the menopause word, I think this is so wrong.

As a woman how am I meant to prepare and decide what is best for me when I am not being told all of the information?  The consequences of each treatment regime should be fully explained, and if not by him then he should be saying that this person will fully explain this for me. But nope, “just pop a pill darl you’ll be right!”

I ask some questions about my scars, he says “what are you worried about, this will all be ripped apart and redone when you have the reconstruction,” and then he adds “are you still persisting with the other breast removal?”  I try to remain calm but I want to rip his head off.

Persisting! You tell me the cancer has travelled, you tell me you have decided to take a conservative approach, then you have the hide to ask me if I am going to take up your precious time with the removal of my other breast!  Only after both my Mum and sister had cancer come back in the other breast????  I need to take some slow deep breathes so I don’t lose it.

I explain to him that I will be persisting with a double mastectomy as soon as I have been given the clearance to do so. I pray to myself that I will hopefully feel more heard by the oncologist in a few days.

I leave feeling frustrated, worried and angry. Why do these doctors minimize this experience, he is effectively removing cutting or chemically killing all of the things that make me a woman and I should be happy?????

As I leave I ask to pay for today as every appointment costs, she says “oh this consult was free, but here is the gap”, she gives me an invoice for $2000 and says “can you pay now?”  Sorry lovely I have not worked for a month or more and there is no money like this lying around in my account. I ask to make a direct deposit when I get home, she is not happy but agrees.

I am to see the oncologist on Monday the 9th, it is a woman, this gives me some relief, perhaps I will feel a little more understood. I get home and am so angry I don’t know what to do with myself, I can’t express it in words, I want to run but I am far too sore.  Aha, chocolate!

 

Adjustment, my new favourite word…..

August 21, 2014 / / 0 Comments

hands-held-tight

Monday the 2nd December 2013

I am home, which is so nice but also weird. I am such a carer, I like to look after people, so being in the reversed role is not easy. I know it is a gift for others to allow them to care for me and that it is selfish to not share that role. So I am trying.

I remember when my Mum was in the final stages of her disease and the cancer had progressed to her bones and organs she needed 24 hour care. As a family we all rallied as much as we could and looked after her at home. Well, to be specific she moved in with one of my sisters and we did our best to support my sister. Obviously, most of the care fell on this one sister, until mum was in the final stages and we were all there together.

My Mum fought this care, she too was a carer and she did not allow us to care for her. This broke most of our hearts, as we just wanted so desperately to care for her as she has so lovingly cared for us growing up. She struggled and in many ways became frustrated, as she was less able to do things for herself.   This translated into so much tension for her as we tried desperately to love and look after her. Fighting about something like this was the last thing any of us needed.

So seeing this battle and feeling it on the receiving end, I do not want to be the same I want to allow others to care for me when I need it. It is not easy it does not come naturally to me at all. I learned from my Mum to care for others, not to receive.  She taught me well, actually she taught all of her girls well.

My Mum would not ever ask for help, she walked on a fractured hip for weeks before the Doctor would even Xray it for her. I remember him saying to her, “if it was broken there is no way you’d be walking!”   He did not know my Mum hey!

So I am adjusting to asking for help, even getting out of the chair is hard; my chest is just so sore. The unexpected pain is the drain site. The drain is through my chest and into the space where the tissue was removed from my breast. There is about 0.5 cm of tubing wound up and around my chest. There is a bag attached and each day a Community Nurse comes and measure the fluid makes sure there is no infection and drains the bag.

The drain it self is so sore at the site of the entry into my chest. The nurses refer to it as “drain pain.” Apparently at times the drain can push on or aggravate nerves, this causes a burning pain that is hard to describe. This is the worst part so far, it is so painful there are times where I am afraid to move because it is like a hot knife in my side. They say it will be in for at least 2 weeks – too much fun!

I am propped up in bed at night unable to sleep well; I am a stomach or side sleeper so this is not acceptable. When I do sleep it is due to pure exhaustion. Sleeping pills anyone? I have a few to play with, most of them get me to sleep but I wake up at inhumane hours and then watch night time TV, which is scary.

I have woken poor Marc so excited about steam mops and all kinds of gadgets, selling him all of the benefits that have been drummed into my subconscious through the wee hours. You are so vulnerable at this time of day! Marc is thinking, “hide the credit cards!!”

It’s quite worrying really, how many people fall prey to this unrelenting marketing when they are at their weakest. Perhaps I should start a group called “Home shoppers anonymous” “Hi My name is Kylie, I shop at 2am from my darkened bedroom whilst wearing a snuggy purchased through this very shopping method.”

Surely I am not alone, am I?

 

 

Something’s Gotta Give

August 18, 2014 / / 0 Comments

breaking-point

Friday 29th November

So it is the day after my mastectomy.  I am sore, my chest is hard to see because of the dressing but the place where my right breast should be is a concave weird place. You think that without a breast you will look like a man, but you look hollow, almost dug out. It is weird to look at myself, hollow one sided chest and black eye, what a sight!!

Marc brings Samuel into see me today, he has to drag him in as he is frightened of what he may see. He is surprised to see that I still look like his Mum. Bad hair, drawn face but still his Mum. They need to get off to their days of school and work  so they leave me to rest.

I decide to write to the GP who would not support me in my search for answers. I decide that something needs to be said. I wonder how many others have been stifled or not pursued treatment after such a negative response. I could have so easily not pursued things with another Doctor. After all what if I was just being a whiner?   Despite feeling so bad sometimes you lie to yourself and tell yourself it’s not worth pushing, after all it is probably nothing, you just need to toughen up princess.

Have you ever discounted yourself like that? I know I have for a very long time. I think it’s part of the process that we go through at times when life gets busy and we start to lose ourselves. Particularly, those of us who have many roles. Here I am Kylie the Mum, Wife, Step mum, Business owner x 2, Sister, Friend, Colleague. I know most women who have had children can begin to lose their identity. I think its because we just get used to putting everyone else’s needs before our own. I mean in our house even the pets get fed before I do.

But this will need to change, I am realising that whilst there is a big part of this situation for me that is genetic, there is also a big part that relates to lifestyle I am sure. I have been putting myself last for a long time, not taking time for my self or care of myself. The funny thing is that no one asked me, or even expected me to, I just did it. Like being a good Mum and Wife means you come last.  Where does that message come from?

Again, my kids or Husband never said this to me, I just allowed it to happen. I passively stood by and decided that what I wanted or needed didn’t matter. How did I end up here?

It made me think back to earlier this year when I was asked by a Counsellor “what makes you happy?” When she asked me I sat there dumb founded thinking I have no idea, I burst into tears because it hit me just how sad that was. The worse thing is I am not the only loser here, so is anyone close to me. They don’t get the best of me either, just the chewed up spat out version.

So laying in a hospital bed, I have much time to think about my future and to think about how differently I am going to live my life. I only get one crack, I have much to offer and much more I wish to achieve in this short adventure on planet earth.

I decide I want to do life laughing, running, having a ball rather than depressed, run down and dragging my feet. So things will change, I will need to prioritise both my physical and emotional health. In doing this I will be able to be there for those special people in my world.

How this change is going to happen is another story and I am sure will be a long and evolving process.

 

 

 

It’s cut off day

August 11, 2014 / / 0 Comments

fearless quote Thursday 28th November 2013

Surgery day has arrived very quickly! We arrive at St George Private Hospital by 6am. We get all booked in and fill in all the paperwork. I have been nil by mouth since midnight.

The first “procedure” of the day is to have radioactive isotope injected at 9am. This is to see if any cancer has travelled out of the breast to the lymph nodes. It is a fairly new procedure so I am glad I get access to this new technology so to speak.

We meet another lovely lady and her family in the waiting room. She is there also to have the same procedure for a lumpectomy today. You can just see the fear on her face. Poor love. We make small talk and try to act like everything is going to be ok.

My lovely man Marc is with me every step of the way. Any one who knows us knows we cope with life through humour and lots of it. The poor technician that takes some images of me is very straight laced. Marc is trying to make him laugh and he is almost tripping over himself just to get out of the room more quickly. I am laughing so hard for a moment I forget what I am at the hospital for.

The injection of the radioactive substance really hurts but it only lasts a little while. This will trace the pathway from the breast to the lymph nodes so they can be biopsied and tested for cancer. I am then escorted back to the preparation area for surgery. I wear what I think is my most comfy mastectomy undies only to be told they are made of the wrong fabric and I need to wear these ridiculous paper ones. So uncomfortable, honestly there is no end to the embarrassment you experience.

The Breast care nurse comes by, she is lovely and makes me feel really at ease. She explains that I will receive some support regarding a prosthesis after the surgery and also receive support at home post surgery due to the drains I will have in place.  She also tells me I will get a soft prosthesis and a bra to wear after surgery.

The anaesthetist comes by and I feel like he has stepped of the set of mad men, he looks like he is right out of the 1960’s. A lovely man, funny, happy to chat, I am glad for the distraction to be honest. Its getting near 12 and I still haven’t gone in for surgery. I am becoming really thirsty and agitated, lets get the ball rolling people!!!

I finally go in for the surgery at 1pm. I get the smooth talking South American orderly who is as smooth as silk. He is wheeling me along and says in his smooth accent “So what is Santa Claus going to get you for Christmas?” Without even thinking is say “Breast cancer how about you?” Poor guy, does not have an answer for that and I am far too focused on the next part of my day to apologise.  I didn’t mean to sound nasty that is my bald sense of humour at times.

I am aware that I am awake and back in room by 5pm, I feel sore but ok.  I have a dressing on my right side chest and a drain coming from the right chest wall as well as a PCA for pain. At the push of a button I can get pain relief. Marc is there when I wake up which is nice. He has to leave at dinnertime so that the kids get fed, and I settle in for a quiet evening.

By 10pm I have the nurses encouraging me to get out of bed and use the toilet. This is not easy, it is very painful to move and I am not able to go. We realise pretty soon after a few attempts that it is more about performance anxiety than a surgical complication. PHEW!! I sneak to the loo by myself and am able to go, then tell the nurse that all is well.

Then at about 1030 the anaesthetist comes and says “hello.” What an unexpected and lovely surprise. After some routine small talk, he asks “so do you remember anything during the procedure?” I answer, “No should I?” He responds with a weird, “Nooo”.   He then vanishes into the night.

After he has left I look in the mirror and notice that I have a black eye!!! What on earth happened in that operating room?  As I lay there, laughing to myself,  pondering the endless possibilities I drift off into a broken sleep, first day after my mastectomy, I have survived, in fact I did quite well, I wonder what tomorrow will bring?

Newer posts »

Recent Posts

Recent Comments

Archives

Categories

Meta

© 2024 Bald Barren And Boobless

Theme by Anders Noren — Up ↑