Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: family history of cancer (page 1 of 2)

First day at support group

Again I slept a little better, I think it was because it was a cooler night. Having such call with air in January and February is such a blessing for me. However I still woke feeling like I had been hit by a truck.

That damn truck is never too far away. Thank goodness I have acupuncture today. It always helps me to rest, she always addresses my worst symptoms, I always feel better afterward. If you are going through any challenging illness and have not tried acupuncture I really encourage you to see if it would work for you. How do you know if you don’t try?

I’m so flat all I can think about is my bed. After I finish acupuncture I head straight back to bed. Today is an exciting day, I get to attend my first breast cancer support group tonight. I’m both excited and a little nervous.

I am usually the person running and organising such groups. I’ve always believed in the power of groups. When I went through my divorce the support group literally saved my sanity. There is something about being in the company of people that truly understand that your journey that is so healthy and helpful.

Support groups allow you to see that you are not alone. That is the wonderful thing about them. so I will put on my brave face and go and check it out. That is the least I can do.

The people at the group were very welcoming and have all been through some amazing journeys. Tonight I’m the only one going through current treatment so I feel a little bit alone however everyone is so welcoming and willing to help. They have also been down the road that I am on which is such a gift. I leave it feeling encouraged and understood, for this I am truly grateful.

The pathologist from hell

needleThe following is a true story and has not been enhanced for dramatic value. After seeing the genetic counselor I was sent to the hospital department that takes the blood and gives us the results.

I find the department in the maze otherwise known as the public hospital. I take a ticket and get in line, literally. We are all starving, it’s been a bog day and it’s now 230 and we have not had lunch. In addition to cope with the stress we are all beginning to act a little bit crazy.

I am finally called by a man who looks more like the maintenance man than a pathologist. He has a thick accent and even thicker glasses.

He has to get within 10 cm of the vials and all the needle paraphernalia to get what he needs. I’m thinking “Oh shite this could be interesting” He asks me to sit down, I try to make a joke to loosen my tension but he just looks at me over his glasses, not impressed at all! Even my comic genius is not going to rescue me from this.

He puts on his gloves and his hands explode through the ends of the gloves. He cusses under his breath and proceeds anyway! I am thinking that the purpose of the gloves has been destroyed but he keeps going. Oh well his risk hey?   I’m a pretty toxic chick these days.

His face gets within 10 cm of my arm and jabs the needle in to take the blood. It hurts a little but it’s not too bad.  I’ve had so many procedures involving needles lately it’s just another one.

He says to me “Go and waiting room for 10 mins then I will take a second sample of the blood.” This is something peculiar to the genetic test. I just want some lunch 🙂

During the 10 minutes of me in the waiting room laughing with my sisters about; my luck of getting a blind pathologist I can’t understand, who doesn’t have a sense of humour, whose hands don’t fit into the gloves, he calls me back in.

I enter the room and sit down. He puts on another pair of gloves, pushes his hands through the ends again and seems to swear in his native tongue. I stifle a laugh.  He’s like a pathologist version of the hulk.

He takes the dressing off my arm I say to him gently, “Your not going to take blood from the exact same place are you?” He looks at me over his glasses again, mumbles something in his thick accent and proceeds to jam the needle into the exact same spot as the previous needle!!!!

I gasp but steel myself; this man will not get the better of me! I’ve been through worse than this and I just need to get out of here. Soon enough the ordeal is over, I am still shaking my head as he is filling in the paperwork. This man with coke bottle glasses, dressed like a maintenance man, with these gloves hanging off his hands like the clothes on the incredible hulk! How can I do anything else but laugh?

I leave; I thank God it is over and take a deep breath thinking soon we will know the truth of our genetic heritage. My sisters are waiting I anticipation to see what has happened this time.

We leave, I share, we laugh, we eat lunch and I take my sister to the train to return home to her family. I know she is burdened by what might be, I am too but still feel empowered by the process. I encourage her to try not to worry until we know what we are dealing with. There is no point in spending all of that negative energy on something that may not be.

She agrees, bit I know her too well she will go over this a billion times before we find out. What a day….. What promotes strength for one, promotes fear in a other.

How dare they!

vulnerability-signsmaller-1024x682I woke early today, feeling pretty good actually. I did another 40 mins on my Pilates reformer, you know it feels great to move my body again. Marc and I then headed out to Cronulla to have breakfast with some friends in Cronulla.

On the way to Cronulla I get a message from my previous  GP saying he has received a requested to provide information and he is confused as to the context. I call him and he says my insurer has contacted him asking about my mental health. Bloody insurer, they are trying to discredit me already!! I make an appointment to see my GP that day.

I feel so insulted that they are trying to catch me in a lie.  I pride myself on being honest so this really hits me hard.  I know this is just a process but this has become very personal for me.

I then place a call to my Financial planner and leave a message. I am furious! What has my mental health history got to do with a breast cancer diagnosis? You see my background in the rehabilitation industry has seen on many occasions, good people having claims not honoured through a loop hole, I won’t let them do this to me!

Breakfast is lovely, right on the beach.  but I am dreadfully distracted buy the furore in my head.   I enjoy my food thinking tomorrow I will be as sick as a dog again so make the most of it. After breakfast I get a call back from my financial planner. He explains that the insurer is confused because in the past I have been quoted as having anxiety, stress and been prescribed valium. I explained that this was all to do with the IBS (Irritable Bowel Syndrome), which is clearly stated in the insurance paperwork.

My poor Financial planner, he can hear how angry and insulted I am, he explains it is part of the process and they want to ensure I have not left out any important info in relation to my health. If I have then they will not honour the claim. I also find out they contacted a psychologist I saw years ago to have some counselling. Really private stuff and they just get to go through it.  I feel really exposed and traumatised. “How dare they!” I scream to myself.

Now I am feeling vulnerable and out of control. If I don’t get any financial support during my illness it will drastically change the course of my recovery. I may need to make financially driven decisions about do I or do I not have complimentary medicine? It is really expensive.

I realise how blessed I am to even have insurance as many do this the hard ay with none.  I take my hat off to anyone who has done this without insurance or without the financial backing to have what treatment you want to have.  Truly, I can’t imagine how hard it must be to go through this and to be in financial hardship.  To the point, Marc and I have survived by refinancing our mortgage.

My mind is going at 1000 miles per hour.   On the way home we pick up a friend of our son’s bring him home for a catch up, we make lunch, have some visitors, go shopping, make dinner, clean up, cover bloody school books and I fall into bed.

I know I am doing it early but I also know I am going to be out of action for the next week potentially after the next round of chemo. I am absolutely dreading the thought of tomorrow…….

Anyone for Scones??

photoSam comes into the bedroom really early. He is really hot and feels sick. It is a really hot morning so I ask him to come sit with me by the pool. He ends up getting in the pool to cool down and I stay on the side.

I’m sitting there when Marc comes out and says hey babe there is a heap of hair on your top. I touch my hair and it just comes away in my hand like fairy floss. I wait for the dread, for the tears but I just kick into ‘manage it’ mode again.

I go onto the bathroom and just keep pulling handfuls of hair out. It’s Sunday and we are due to go to church. So I ask Marc to give me a buzz cut. I didn’t think I would cope with Marc doing this but I am really ok with it.

Marc performs the deed and we do some silly shots along the way. After all when else will I have the chance to have a real Mohawk??? (See picture above.)  Yes I was trying to look like I and attitude – you know punk rocker isn… not sure if it worked…..

I am surprised at how ‘ok’ I am. I was so worried about the emotional weight this process would take but I actually felt free. I felt at peace.  Marc takes a photo of the two of us, (see next picture), and before I know it he has posted it on his timeline on FB!

IMG_1386

Under normal circumstances I would not want my photo posted at all, let alone my first bald shot.  Again I was ok with it.  I did ask him to let me know “before” he does that just so I am aware.  But still amazed at how I felt.

I wear my cap to church for the first time. I feel like I stand out like a sore thumb but I will get used to it.  One yucky thing is how hot my head is.

In the foyer at church Marc is talking with a new woman he has just met, (he does this all the time). He introduces me to Helen from Chicago. She is a bubbly friendly woman. It’s her first time here, she is on holiday and has popped in.

As we are walking into the service, she stops me and says “can I ask, have you got cancer?” I respond openly “Yes, Breast Cancer, I lost my hair today so this is the first time I’ve worn one of the hats.”

Helen tears up as she explains to me that she is a breast cancer survivor and this is her anniversary celebration trip for ceasing treatment. She explains her hair has grown back and she is feeling human again. She looks me right in the eye and says “It’s going to be ok.” By now we are both crying and hugging. It was just such a beautiful miracle to meet her on the day when I was feeling vulnerable and unsure.

The gift of meeting Helen that day will never be forgotten. This is another example of how God has just provided for me when I need it. I am so blown away at the miracles and endless support and love that surround me.

I never thought I would say this but my B day has been such an amazing day. It has been such a gift in more ways than one. Now its time for me to embrace my scone.

How Long is this Bloody Valley??

sunrise out of darknessI woke at 530 am with a growing pain between my shoulder blades. Initially it felt like something literally stuck in my chest, the pain grew to be unbearable.

The pain just keeps growing, to the point where I don’t know what to do, I move, I take slow deep breaths, I walk, nothing eases it.   I lay there rolling about in pain, moaning, that too does not help.  I really don’t know what to do with myself.

After an hour of feeling like I was having a heart attack I get up and take some antacid, only out of complete desperation. After a second dose the pain began to shift. OMG, that was awful!!

Now I am almost afraid to move, so I make a note that on Day 6 post chemo this may happen. This is exactly why I decided to keep a journal. Apart from the feeling of “I am dying” on waking with his horrendous pain in my chest; I feel generally a little better today.

I still have toxic acidic burning diarrhea, a fuzzy head, I am in slo mo and my entire  body is sore ( like I’ve been hit by a bus).  Apart from that I feel better.

I saw my GP and had Acupuncture today. My GP at Sydney Integrative (Formerly U-Clinic) is wonderful. She listens, she helps, she is always willing to take the time. I am so grateful for her support.

I also had acupuncture today, it helps, it eases my symptoms, gives me relief from the pain and heat coming from my body. If you know of any one going through chemo and they are struggling please let them know that acupuncture may be of assistance. Gosh at the very least it is worth a try.

I am having weekly treatment with acupuncture particularly through the full on assault of chemo. I go home and rest. There is literally not much else my body will allow me to do. So rest I will.

I am believing that this is the beginning of the sun beginning to shine through the darkness of the valley I have been in. This is but a season and it too shall pass.

 

 

 The Valley continues

Valley 2 I did not sleep well at all, too much pain and heat for me to get much sleep. I was awake every hour or so, which adds to the exhaustion. Also, the nights are just so long and lonely.

Marc has always said for me to wake him, but one of us needs to be functioning, so I cant wake him all the time. Besides I am the daughter of a night shift worker – YOU DON’T WAKE UP A SLEEPING PERSON! I was trained well; sleep is far too precious.

I almost cry with gratitude when daylight comes. We spend a quiet day doing some light errands until early afternoon. I am so slow and sore. As we drive past people I see them smile and I think, “How can they?” “What is there to smile about?”

I  am so caught up in my own little toxic dark world. Even blinking seems too hard. My head and body feel thick, fuzzy and hot.   I have bone pain in my back, hips, legs and feet.

I had to give myself the injection again today. I didn’t count to three for quite as long as yesterday but I still took a while. It’s all the head games I play with myself.

So it’s back to bed for me. I hate the thought of it but if I had a tank it would be soooo empty right now.

I need to remember that this is temporary; this too shall pass. I am not stuck here, it is only for a short time and when I get through I will find myself, my energy and my smile again.

Day 3 post chemo – I have entered the valley of the shadow

valley of the shadow So as I have said, I feel like I have entered the valley of the shadow of death.   Don’t worry folks, I don’t plan on staying here. I have not slept at all well through the night. I am in so much pain I just cant get comfortable. My whole body hurts.

I’ve only felt something similar when I was involved in a head on collision many years ago and every part of my body felt bruised and battered. This is similar but with a toxicity like a 24 hour bug from hell.

The bone pain in my legs back and hips is unexplainable. My head is hot and fuzzy, my body is stiff and my entire digestive tract feels bloated and inflamed. Like my system is screaming at me “WHAT HAVE YOU DONE!!!”

I was in the kitchen trying to find something to eat as I feel weak but am scared to upset my system any more. Samuel my quirky gorgeous 12 year old son enters the kitchen and says “Ohh mum your hair has started to fall out!” In my own mind scream, “Not know I am so not ready.” The look on my face must have been priceless, as he soon tells me he is only joking. Oh kool, hah hah love, that’s so funny!!! NOT!

So now I feel paranoid as well as like I have been struck by the toxic avenger. It reaches 11am and I am required to give myself an injection. The injection is to protect my body from dropping too low in the blood count. The nurses showed me how to do it on the first chemo day. They give you the option to come in for 5 days and have it or you can do it yourself.

Guess what I chose? Yeah, don’t want to be a burden, I am far too practical as well, so how hard can it be? The actual injection itself is not hard, you stick yourself in the tummy and you push the syringe then you take it out, Simple!

I know what it feels like, sometimes when you get just the right angle you hardly feel it, its great. Other times you get the wrong angle, and it can really sting and burn. So here I sit counting “1, 2,   3”…nope. Again, “1, 2, 3”…nope. Again, “1, 2, 3”…nope. Now I am getting frustrated with myself, “Kylie JUST DO IT!!!!”

So I do. Funny, it’s nowhere near as bad as I think, a little sting but ok. Man it is such a battle of the mind! I feel slightly proud of my delayed bravery.

The day progresses and I just get worse; the toxic avenger has turned into a freight train that has run me over. Everything hurts; even blinking is hard. I fall into bed and stay there. All of the pain is horrendous, my head and body is hot and buzzing with toxicity. I pray for sleep, please come and swallow me into your peaceful embrace.

 

Day 2 post chemo – toxic city

toxin symbolIt may seem tedious but I am committed to keeping a daily journal through treatment as it helps me to manage symptoms, cycles and to plan ahead. If you or someone you know is going through a similar thing it can really help to identify patterns, discuss symptoms with their health team and help them to cope through forward planning. For example if you learn that days 2-8 are your worst then plan to look after yourself and rest as much as you can during those days.

I was told to expect days 2-7 to be the worst when it would slowly pick up until I felt good and was due for the next treatment. I’m also keen to count at this stage so I know when to expect that my hair may fall out.

I’m such a planner I want to know roughly when so that I am not like in public and suddenly my hair falls around my feet. You would not know the crap that goes on in my head. Imagine your hair just falling from your head all at once. I have – vividly!

So day 2, I woke through the night at 1230am, 130am, 330am, thinking I needed the loo due to my threatening bowel, each time was a complete false alarm. I’m up for the 8am church service. I feel like crap literally, but I need to go and seek the presence and peace of my God.

My head is fuzzy and achy. My tummy is percolating and I am not sure if I can eat, but I know I need too. I feel weak and shaky. I have tingling in my fingers and toes and my hands and feet are really hot. I also have this weird ache in each of my teeth like they may fall out, not nice at all.

I feel like have had the stuffing knocked out of me. I took Maxillon to help with the nausea and took it easy after church. It is Marc’s Fathers Birthday today so we go and see him for a birthday lunch. I didn’t cope too well but it was really important that we spend time with him.

Once I get home I hit the wall and go back to bed. I toss and turn as I am not able to get comfortable. I have really strong back and hip pain. It feels like it is right inside the bones. My tummy remains really upset and bloated.

I have been well prepped by the Hospital staff as to how to protect the family from me. For example, when I use the toilet I am to flush at least twice and wipe down the seat. I am not to share cutlery, crockery or toothbrushes. If Marc and I were to be intimate, we need to use condoms to protect him from how toxic I am.  Now that is scary stuff.

It just blows me away that I have subjected my body to such toxic stuff, but to be honest I don’t feel like I have a choice. If it were just me then I may feel more like playing roulette – You know see if totally natural and complimentary work, or just have surgery and go it alone BUT  I need to ensure I am around for my beautiful son Sam, as a birth parent I am all he has.

Day 1 Post Chemo

Good-health-poor-healthSo surprise, surprise I didn’t sleep too well. In fact, I was woken every few hours by the need to use the bathroom due to violent and acidic diarrhoea. Sorry folks but when you signed up for this I promised the truth.

The clock ticked past 245am then 4am. I took some more pain meds for the back and leg cramps. It is so hard to try and get comfortable in bed. I watch some TV in bed, which passes the time but is not ideal.  Midnight to Dawn TV is awful…….. Just saying.

Morning finally comes and sadly today we go to the funeral of a close friends Mum. It occurred to me for a Nano second to decline due to my fuzzy head, nausea and exploding acidic bowel but I could not say No. These friends have been so kind, so generous to our whole family the least we can do is go and stand with them, celebrating the wonderful life of their precious Mum.

We arrive and my mission is to case out the loos in case of a bowel emergency. There are no major issues, thank goodness.  However, the entire time I feel surreal like I am hovering outside of myself, I am now not sure if it’s all in my head or not.  Regardless, the service was beautiful, this woman was treasured by so many.

We pay our respects and head home where I go straight back to bed. I take more pain meds as the cramping in my back and legs has not subsided. I decide to go for a walk and Marc comes with me. Poor love he must feel like he is in a slow motion movie. Believe me I am not fast at the moment. I make snails look like formula one racing cars.

I feel like I have a horrid hangover that has morphed into a stomach bug on steroids.   Despite this I made some soup and amaze balls for myself. Clean eating is the way to go.  I keep saying to myself that i need to put in as many nutrients as I can.  I hope I can keep going as I traditionally do do too well on healthy for when I am experiencing nausea.  When I and morning sickness in my pregnancy I was well known by Pizza Hut ( Meat lovers Pizza), Maccas (their shakes) and Michels Patisserie (ohhh sausage rolls) just to name a few.  I was sure that I would give birth to a cabanossi I ate so much meat lovers pizza.

Getting back to the Clean Eating, if you’d like the recipe for amaze balls let me know and I will share it on the resource page. They are wheat, sugar and dairy free and pretty AMAZING. I learned the recipe form Sara Wilson who is a wonderful ambassador for clean eating and a healthy lifestyle.

Betty boo is still real cute, real sweet but a more excitable more boisterous version of her is emerging. She has such a spirit, I am loving it. I am going to ensure we train her well though J

Well I am back off to bed and I am praying for respite tonight.

Yay! It’s Chemotherapy day!!! Part 2

chemotherapy picChemotherapy is so toxic. It attacks and kills not just cancer, but also all the living, healthy cells in the body and completely cripples the body’s immune system. – www.cureyourowncancer.org

So as the real chemotherapy enters my body I actually do get a headache and begin to feel nauseous. Now I am second-guessing myself, is it real or am I Imagining it? I ensure that we ask every question we have and take notes. Marc has to do this as I am still wearing the ice gloves.

I feel a little more relaxed, there is some tingling in the hands and feet, we advise the Nurse as this is a bad sign and they slow down the delivery of the drugs. I look around the room to notice that cancer is completely indiscriminate. There are young and old here, men and women. All at various stages, some with hair, some without. Some look otherwise normal, some look really sick.

Marc and I have strangely enough had fun today, we have laughed, talked, joked about. It’s been rather lovely really. Apart from the fact I have a raging headache, feel like I want to vomit and have a weird buzzing pain all over my body, I have had a lovely day.

We have spoken bout he possibility of the new edition to the family in the form of a pup. Marc states that he really didn’t intend to suggest we bought a puppy. I ask him honestly how he feels and he is quite excited. He just won’t show it.

I suggest we just go and look at her and ask some questions. For example how do we ensure that the pup and our older dog get along? We cannot upset our older dog, he has been with us for 14 years.

So we agree that we will pop in and have a look at the pet store. After all we need to head the get some drugs from the chemist, I need a combination of uppers and downers, inners and outers, drugs to make you go potty and drugs to stop you, what a mess.

My tummy is percolating as we leave at 5pm and head to the shops. My body is buzzing and everything feels really surreal. I am in for a ride I reckon.  I determined to remain calm amidst the storm.

« Older posts