Storm in an E cup

After my radiation planning day, I thought the next time I would have to go to the clinic would be for treatment. I was wrong. I was called and advised that I had to go and have a 'dry run' on the machine, just to make sure the positioning was correct. I now think this was code for 'we didn't get it right the first time, but don't want to tell you that'. I was at Lana's house and she came to the appointment with me as a last minute decision. I am so glad that she did. I thought I would be there for 15 minutes, go on the machine, get into position and leave. How wrong I was.

It took four radiation technicians over two hours to find the right position to radiate me in. This is in addition to the hour they spent last time doing the same thing. I had to get three more tattoos and have another CT scan. I wasn't worried about radiation, I thought it would be easy. Lying there on the table, half naked in the freezing room, I couldn't believe that this was my life. I was surround by four strangers who were pulling, pushing, poking and talking about me like I was a piece of meat. It was so impersonal and undignified. I actually cried twice while I was lying there and none of the four people even noticed. I was so glad that Lana was with me, so at least I had someone notice that the 2 hours of half-naked imperonsal manipulation was not pleasant for me.

Even after the three hours of positioning, I am still not quite sure why it took them so long. I know I have to be on my stomach for the treatment due to the generous size of my girls, but surely they are not the biggest set they have had to radiate! I have been asked if they can take photos and use them in teaching presentations and also for a journal. I am not sure how I feel about this, as I really don't want them ending up on facebook! Now, I am not an expert on boobs and have seen my fair share in my life, but surely mine aren't that different from others. I left the hospital exhausted, feeling violated and thinking I have the weirdest boobs in Brisbane. This is another reason why it sucks to be single going through this, it would be nice to have a partner to assure me that my boobs are not weird and are not going to appear in a medical journal about freaky body parts. It would also be helpful to have a partner who can wash off all the pen marks they draw on my back.

First night out

Almost two weeks after my final chemo, I was still feeling exhausted but was eager to start getting back into the swing of life. It was Friday night and drinks had been organised at a new bar in the Valley. Usually, it would be a no brainer - I would be there with make-up, glamour shoes and a fabulous cocktail ring. However, getting ready I didn't feel like myself, I actually felt a bit nervous. I have been out to the movies and dinner, but it has been seven months since I step foot in a bar. I had a shower and had to have a rest as I was exhausted after that. I was getting dressed and had to have a sit as choosing shoes also exhausted me. Putting on make-up made me cry, as putting on mascara merely highlighted that fact that I have about two stumpy eyelashes left. Mum offering to pencil in eyebrows didn't help my cause either, again it highlighted the fact that I have Whoopi Goldberg's eyebrows. I just didn't feel like me. I felt like I looked like Uncle Fester with make-up and wig. It is horrible to feel uncomfortable in your own skin. I just don't feel like me anymore. I keep expecting to wake up one day and feel like I used to feel. However, I know that will take time and even then I don't think I will ever be the same. Going through something like this changes you as a person, you would be a robot if you didn't change.

It was good to see friends at the bar and was good to be out on a Friday night. However, I felt so self conscious and felt like everyone was looking at me and knew the I was a fraud. I had fake hair and fake eyebrows. Although, half the girls in the bar had fake diamonds, fake designer handbags and fake boobs, so I wasn't the only girl dressed up in fake.

I have had the goal of making it to the Wallabies V Ireland game on June 26. I have finished my chemo and have not yet started radiation. I have cleared the consumption of rum with my oncologist, so I am excited. It has been a dry Reds season, which was very very very difficult for me. I will probably have two rums and pass out - but they will be the best tasting rums ever! I just hope my eyelashes and eyebrows make an appearance in time for the game.

Just as I had to adjust my parametres in November to take into account my treatment, I have to adjust them once again for my recovery. I have to be realistic about my energy levels and what I can do, but I also have to start pushing myself a little bit. Being able to come back to work after so many weeks away has been great. I am exhausted by the time I get home, but it is worth it. I have to stop being nervous about doing the things that I used to love doing - like going out for cocktails, driving up the coast and going away for the weekend. I just have to keep thinking that every day from now on is going to be a little bit better. I am preparing for the next stage of treatment which is radiation. Once the 30 doses of radiation are complete, then there will be only one stage left before I can reclaim my life.

Intravenous Domestos - part 8 - the last chemo

Sitting here four days after my last chemo session, I am feeling.......crap. My attention span is about three seconds, so I apologise if this blog doesn't make sense. I know that this week is a milestone, and I know that it is another stage of the treatment over with, but I can't see through the post chemo hangover haze. Friends and family are excited that the chemo stage is over, but I am still too bogged down in the side effects to start any celebrations. This week has been a struggle. I have spent more time in bed this week compared to any other chemo treatments. It is an effort to move. I am not sure why I feel like this. It might be the accumulative effect of chemo, or it might be that I no longer have the strength to put on my brave face. The past seven months have caught up with me and I am exhausted.

It is now nine days after my last chemo treatment. I had to stop writing the above part last week as I was overcome with the urge to poop, puke and passout. My sister has called it the triple purge and although I am sure you pay $$$$ for something similar at an expensive health resort - it is not pleasant. I am feeling better, but still not myself. I am not as exhausted and have managed to get off the couch in the past few days, so things are looking up. It has been a strange week. I have tried to be enthusiastic about my last chemo finishing, but I have failed. I have been thinking about it a lot this week and I think I am just exhausted. I feel like I have been standing on a beach being hit by waves, and after each wave I have to stand up and get ready for the next one, but this time I was knocked down and didn't have to prepare for the next one, so I am staying flat on my ass.

The most amazing thing about chemo is that your body actually survives it. I always knew that the chemo phase was going to be the hardest part of my treatment, but I don't think anything can prepare you for the shopping list of side effects. I was thinking about it this morning, the drugs are so toxic to your body. So much so that all your body hair falls out and you can't grow new hair. You feel nauseous, dizzy, your skin dries out, your gums bleed, you get mouth ulcers, dry mouth, you have visual and hearing disturbances, your nails can flake off, you get body sores, your bones ache, your limbs feel heavy, excessively watery eyes, you are chronically exhausted, you lose your concentration, you can't sleep, eat, taste food or poo (except on the days when you have severe diarrhoea), have headaches, it depletes your immune system to nothing, can have an adverse affect on your heart function and will probably leave me infertile. However, having said all of this - it is still better than having cancer.

I have started planning things for the rest of the year - a few trips and events. I am starting to feel like the black cloud is slowly lifting from my life. I am starting to look forward to doing things that I used to do and get back into the swing of life. I just have to remember that recovery is a process, not an event. Nobody is going to flick a switch and I will be back to my normal self.

Intravenous Domestos - part 7

Mentally I felt good about getting closer to the end of chemo. However, physically I felt horrid. I had stopped having the dream where I have an allergic reaction to the chemo and end up in a coma for six years, so that was a good sign. My hair had started to grow back, so I was looking less like Uncle Fester and more like a chia pet. However, my eyelashes and eyebrows were still absent. It also felt good being able to start making plans, without having to check where I am in my chemo cycle. The accumulative effect of chemo was getting to me, I was chronically exhausted and even moving my arms and legs was an effort. I was sick of the side effects and just wanted my old life back. Intravenous domestos number seven went pretty much the same as the last few. It was long, horrid and tiring, but I managed to survive. I had gotten used to the side effects and was dealing with them better. My blood levels were down and I was being held captive at home, as there were so many viruses around, it was best to avoid people. Which meant no work for me. It was like being a caged animal. Although, to be fair in that first week post chemo, I did manage to get out twice. Once to go to the doctor and the second time was to go to the butcher. Talk about living it up! In hindsight, it was best that I wasn't allowed in public. Given that I was sporting the super hot trifecta of cankles, shingles and baldness, I didn't have the strength to fight off the hot men who would no doubt be chasing me down the street.

It was at this point that I started to think about going to a support group. I had thought about it early in my diagnosis, as there is a specific group for young women. When I looked up the topic for that week, it was about young mothers who are dealing with breast cancer and children. I didn't think it would be relevant or appropriate to go along and talk about my 20 half-babies on ice or Barney. Lana and I had our own support group and she was a great source of information and has become a good friend. Single women who are dealing with breast cancer have different issues to deal with, such as the egg harvesting and being alone in those dark lonely hours. I wasn't totally alone, I did have my family, friends and Barney. It is surprising how a six month old puppy can show more compassion, care and love then some grown men. When I was feeling better, Lana and I decided to go along to the young woman's support group. However, the speaker for that week was a man who was talking about dealing with a partner who has breast cancer. As we are both single, it wasn't relevant for us so we went to dinner and a movie instead. It would be good to have a support group specifically for single women, with topics that are relevant.

I thought I was coping well mentally with the past few months. I am a talker, so talking to friends and family about what I have been going through is a huge help. I have also found it beneficial to write the blog and get these thoughts out of my head and out into the world. A lady I had met at chemo had recommended a psychologist who specialises in women who are going through breast cancer. Although I felt I was coping ok, I didn't want to find out that I am not dealing with it and have it bite me on the ass in six or twelve months. So, I made an appointment. She was very friendly and easy to talk to, and telling my story in an hour was quite emotionally draining. However, she did give me the 'sane' stamp of approval, so it was good to know that I am dealing with it now.

It was also in this week that I had my radiation planning day - which meant tattoos! I wasn't so worried about the radiation as I had gone with Lana once and it seemed quick and pain free. I think that if I can cope with chemo, I can cope with anything. I posed quite a challenge to the radiation staff and it took them an hour to find a position they could radiate me in. As it turns out the position is on my belly with my arms above my head, they say it looks very uncomfortable, but it is the same position I sleep in, so I am well in my comfort zone. If it wasn't for the freezing room, the radiation machine and the four people staring at me half naked - it would be just like having a nanna nap! I must say I was a little disappointed with my tattoo. It isn't even worth showing anyone for sympathy as it is the size of a pin prick. I will be surprised if the radiation therapists will be able to find it.

The insurance battle

The week before treatment number seven, I was feeling well enough for my parents to go away for a week. My parents usually went away quite often, but they hadn't gone anywhere for the past six months. I enjoy my own company and I also missed being alone. It had been six months since I had more than a few hours to myself. Mum was reluctant to leave me, but I think it is important for them to have time to themselves also. I had to ensure mum that I had enough support on notice if anything went pear shaped. They did pack up and go, but mum called about four times a day to check up to make sure I hadn't disintergrated without constant supervision. It was a tiring week, but I enjoyed the time to myself.

It was also during this week that my four month long fight with the insurance division of a large bank came to a head. I had income and loan protection insurance with this particular bank. However, according to their policy breast cancer isn't covered under sickness, it is covered under trauma. Whilst I will attest that having breast cancer is traumatic, I can't see how it is not an illness. Conveniently for them, I didn't fit into the trauma category either. My last option was to apply under disability. After filling out countless forms, sending in letters and personal details about my finances and medical condition, I was declined under disability. It turns out that working a maximum of 20 hours every three weeks doesn't make me disabled enough. I felt like I was being punished for trying to keep my life together and keep my job. This was also the line that I was given by Centrelink. I had applied for a sickness allowence, but was declined as I earn $8 too much a fortnight. I was advised this after spending about 4 hours filling out forms, so you can imagine I was super happy to hear that news. I was also advised that if I drop my salary by $123 per fortnight, I would be eligible for a payment of $6 a fortnight from K-Rudd. I know I am not thinking very clearly at the moment, but this didn't seem like a good deal. K-Rudd can keep his $6 a fortnight! I can't even believe that $6 a fortnight is a payment category.

Not being a person who takes no for an answer easily, I dug my heels in with the bank. I thought the purpose of paying for insurance was so that you can claim when you are in need. After speaking to many people who were not very helpful, I was given the direct number for a supervisor who was supposed to help me sort my issue out. As it turned out she was initially helpful and my payment was approved. However, the payment was paid into my loan account, which I was unable to access, so I basically had been fighting with them in order to pay themselves back. As I hadn't missed a payment and was not in arrears, I was not happy with this situation at all. I rang the helpful lady back, but she had turned into a condescending, toxic and unhelpful person. I asked if the payment could be paid into my account that I had been paying my loan out of, since I hadn't missed a payment. She kept parroting to me that that was not the policy. I asked her if I could discuss that policy with someone and she just kept saying that was not the policy. This was on a Friday afternoon and I had chemo again on Monday. I told her that I had to pay $400 for chemo on Monday and how was I going to do that with $38 in the bank. This was not exactly true, but was good for dramatic effect. She spat out the following reply - 'We are not here to pay your chemo bill Karen'. It was at this point that I took a deep breath, counted to ten and said 'I am not asking you to pay for my chemo. Thank-you very much for your time, but I will not be needing to speak with you again' and hung up the phone before I let a barrage of swear words escape my mouth. I rang back a few minutes later and asked to speak with her direct supervisor. I am not usually one to complain about poor customer service, but I felt that this particular toxic woman deserved to be reprimanded. I am not a particularly sensitive person, but I found her comment was insensitive, abhorrent and just plain rude. I was advised to go to a branch and see if they could sort out my issue that day. I went to my local branch and spoke with a young girl who gave me the best customer service I have ever received. She was sensitive, informative and came to me with solutions to my issue. Basically, she was the antithesis of the toxic person I had dealt with earlier that day. It took an hour and a half, but this lovely young lady sorted out my issue. She had the misfortune to speak with the toxic lady, who made her cry. She was also going to put in a formal complaint about the toxic woman as was the branch manager. I took in a bunch of flowers for the young girl, who was so helpful and when she saw me she started crying. I would advise anyone that has income or loan protection insurance to check the policy to see what is covered. A friend of mine was talking to her insurance broker about income protection insurance and was advised that not all types of breast cancer are covered. It's not like you have a choice of which one to get!

Monday came along and it was chemo day. I was feeling quite perky and upbeat, which was strange for a chemo day. However, I had solved my issue with the bank, I had secured Powderfinger tickets and I knew that the toxic woman was going to get in big trouble - so I had a few reasons to smile.

Intravenous Domestos - part 6

I had heard from a friend that there was a study done in America (of course) about Goths who are going through chemo. Apparently the dark nail polish preserves their nails. So, armed with this knowledge I went to the Chanel to purchase some Rouge Noir nail polish. The lady was very friendly and chatty and asked if I was buying the nail polish for a special event. I told her that it was for chemo and told her about the Goths. She then went nuts and gave me samples of everything! So, purely for medicinal purposes, I booked myself in for a manicure and pedicure before treatment number six. Unfortunately, it was not medical enough to claim on my health insurance. I also booked myself into the dentist and I had heard that it is good to have a check up before having too much chemo. It has something to do with you producing less saliva, which can cause a faster build up of plaque. I was also showered with samples, but they weren't nearly as exciting as the Chanel sample bag. Most of the samples had to do with combatting my dry mouth, as I was drinking about half a litre of water during the night, which meant many nightly toilet trips. For the record, if you are ever offered fruit salad flavoured oral lubricant, politely say no and keep drinking the water!

Before the intravenous domestos number six started, I saw the oncologist and gave him my long list of side effects. There were a few of these side effects which required other medication. I was on so many drugs that I had to eat a smaller breakfast just to fit them in. He lowered my dose of the terrible Toxotere, so hopefully that would make my recovery shorter and less horrific. I had gotten into the routine of the chemo treatment. Treatments were made easier and seemed to go faster, by chatting to other patients. I found it very helpful speaking to one lady who also had breast cancer, but was further along in her treatment than me. It was also eye opening to speak to another lady who had breast cancer, but it had spread to her bones. It made me realise just how lucky I was that I was officially cancer free and all this treament was just mopping up any microscopic cancer cells before they lodged somewhere and could do damage. I haven't seen that lady for a while, but I pray for her and hope she is ok.

The recovery from this treatment wasn't as bad as the last one, thanks to the drop in dose of Taxotere. Instead of taking two weeks, I felt better after ten days, so that was an improvement. I still had no appetite and found it hard to eat thanks to the bleeding gums, but I did find it helpful to drink a glass of Sustagen rather than eating a meal. Even when I was feeling nauseaous, it was good to have something in my stomach, as the longer I went without eating, the more nauseaous I would feel. However, after this treament I had a new side effect of blowing blood out my nose. As the chemo was accumulating in my system, my platelets were down which lead to me bleeding. My legs had a great collection of bruises and I was feeling exhausted. I was keeping my eye on the prize though - only two more of these horrid treatments to go! Followed by 30 doses of radiation and 14 doses of Herceptin, but we won't think about that yet.

Things I am grateful for....

I have been thinking about the past few months and all the things that have happened. Whilst it has the most difficult time in my life, and I have been faced with many challenges, there have also been special things that have happened. From the beginning I have been overwhelmed with the love and support from family and friends. Not only from my close friends, but also from people who I have lost contact with over the years. I am grateful for the cards, letters, phone calls, flowers and presents that have been delivered. I also loved the many pop-ins and delivery of hugs, kisses and presents for myself and Barney. Even when I was not up for visitors there would be gifts left in the letterbox or at the front door. I have received cards and presents from people I haven't even met and live on the other side of the world! One night I woke up at about 2am and was feeling particularly alone. I started thinking about everything that was ahead of me and I started crying, wishing that there was someone there to comfort me. I rolled over and I saw a box that was full of cards and letters and I thought I am lucky, I don't have one person to comfort me, I have about 100 people who are thinking of me. I am grateful for all the masses that have been said for me and the many prayers. I think by now I have a direct line to God!

I am very grateful for the friends who cooked meals, so that my mother wouldn't have to think about cooking after spending a day at the hospital. I am grateful for my cousin who sent me a present after every chemo treatment, so there was something to look forward to in that week. I loved the fact that my cousin, who I hadn't seen in about 10 years, flew up from Melbourne to spend the weekend with me. I love that I get daily phone calls from people seeing how the treatment is going. I am grateful for the many people who leave voicemail messages and I apologise for not returning them all. I am grateful for my work colleagues who have been nothing less than amazing and supportive. I am grateful that my sister who did the breast cancer walk and raised over $2000 for research into this insidious disease and bakes me my favourite cookies. I am grateful that my brother flew up from Canberra to see me before my operation, even though he was only in Brisbane for about 5 hours. I am grateful to my friend who flew up from Sydney and spent the weekend in Noosa with me. I am grateful for the people who came and saw me in hospital and helped pass the boredom. I am grateful that I met another girl, through family friends, who is going through the same thing as me. She and I have become friends and we are each other's support group. I am grateful for my friends who still invite me to every social event, even though I can't make them. I am grateful to my friends who come and have dinner with me at 6pm, so I can be in bed by 7.30pm. I am grateful to the Queensland Reds who made it worthwhile for me to get out of bed and make it to the home games.

I am grateful that I live in a country where I have access to the best medical care. I am grateful that I have breast cancer and that through research and development, there is so much treatment and support available. I am grateful for my parents and siblings who have always loved and supported me. I am grateful to have such a wonderful and loving home to return to in order to heal. And finally, I am grateful to me - I have cancer, but I have the strength to kick its ass!