I have had cancer, now what?

It has been 17 months since my breast cancer diagnosis. So much has happened since November 25, 2009 - when I think about it sometimes it makes my head sore. Going through the gruelling treatment I think I was in survival mode, just doing what ever I had to do to get through each day. It's been over a month since my last treatment and I have felt a mixture of excitement, relief and anger. I didn't realise that I was feeling angry until a few weeks ago.

Last week I received an email from a friend's mother, who is an amazing woman who has battled cancer three times. She gave me some good advice which started me thinking about the past 17 months. She said that she found the first year after treatment stopped was very hard. She told me that I had to make sure I had to look after myself and be kind to myself. When you are going through treatment, you have the support of friends and family, everyone is aware of the tough times you are going through. It is very visible - I was bald, pale, had dark circles under my eyes and was generally looking pretty gross. When treatment finishes, people think that you and life are back to normal. I expected me to be back to normal, but after 17 months of being consumed by cancer - I am not sure what 'normal' is anymore. I will never be the same person I was before my life imploded on that November day, I am not the cancer version of me and I am not sure where to go from here.

I still have the support of family and friends, but now I find that little things which wouldn't have bothered me before - just piss me off. I have this underlying feeling of anger and I think it is because I am not sure where to go from here. My hair is back, I am working full time and life is good - but I still feel angry. I don't know how to shake this feeling off and not sure how to move forward from here. I know that I want to move forward and get as far away from cancer as I can. Right from the beginning I said that I don't want to be known as a cancer survivor, I will always be Karen, who just happened to have had cancer. But, now what?

Happy day!!!!!

I came to treatment today thinking that it was my third last and counting down the days until my last. As it happens, I miscalculated and today is not my third last treatment.....it is my last!!!!!! I have been thinking about this day since January 7th 2010, when my chemo started, but I still feel unprepared.

I started writing the above entry two weeks ago and I haven't been back to the blog since. My last day of treatment came as a pleasant surprise, but I wasn't mentally ready for it. I had my end date as April and it is a awesome that it is earlier, but it just feels weird. I didn't believe the nurse when she told me it was my last treatment and I made her check with the doctor and the pharmacy.....twice. Once it had been confirmed it was my last treatment - Mum cracked out a happy dance in the chemo clinic, I know she has been waiting for this day even more than I have. We then spent some time wondering how we would celebrate this momentous day. I feel like we have had celebrations for my birthday, Christmas and a few other family birthdays. So, the The night of my last treatment, I spent a quiet night at home alone. I know it was a great day, but I just wanted to spend the night alone. It still seems surreal to me that I have no more treatments. I will still have the joy of having a needle plunged into my chest every few weeks for the next 12 months, to flush the porta-cath, but at least it doesn't involve drugs which make you sick and bald and tired and gross.

I have also officially moved out of home, although there are still some items I have to pick up - lots of shoes and Barney! For the time being Barney is staying with mum and dad, with me having weekend access visits. I didn't realise just how much I would miss that fuzzy gold head and huge black nose. He and I have spent so much time together in the past 12 months, he is a huge part of my life and I miss him terribly. Luckily I still pop in during the week to see my parents, have dinner and see Barney.....not necessarily in that order of priority, but don't tell my mum!

Life is getting back to normal - I have had a haircut, am back at work full-time and the social life is definitely back on track! I can officially say that post-cancer - LIFE IS GREAT!

Valentine's Day

On my walk to the office this morning, I counted eight delivery men delivering flowers, chocolates and presents for Valentine's Day. I recalled Valentine's Day a few years ago when was feeling a little bitter about all the girls walking through town with armed with presents and smug looks on their faces. It was at this point that I saw a homeless lady, who was pushing all her possessions around in a trolley. She was unwashed and wearing light coloured pants that she had soiled. It was at that point that I thought, there are people in the world worse off than me and I should be grateful for what I have and not lament over what I did not have. Later on that day, I was driving through the city and saw the homeless lady again; once again I was filled with the thought that I am lucky to have so much in my life. That was until she turned around and I spotted the huge bunch of flowers she was holding. It is now 4.30pm on Valentine's Day and I am currently sitting in the chemo clinic. Some girls get flowers, some girls get chocolates, some girls get gifts in duck egg blue boxes - I am getting chemo. Where is the justice???

However, I calculated that this is my fourth last treatment and I will be officially finished on April 18th!!!!!! Only 63 days left. And whilst 63 days might seem like a long count down, it doesn't feel that that long when I look back to when I started this in November 2009. By the time I finish, it will be 16 months of treatment done and dusted. I feel like I can tick 'Operation Kick Cancer's Ass' off my to-do list and move on to the next item. As the weeks progress, I am starting to feel more and more like myself. My bloods are slowly improving and I am getting more energy. My hair is starting to grow, in fact I was somewhat optimistic and plugged in my hair straightener the other week. However, in my attempt to straighten out the bev curls that are sprouting at the nape of my neck, I ended up burning the back of my neck, so the hair straightener has been once again packed away (but hopefully not for too long!).

I am also moving out of the family home next weekend. I feel that this is an important move to take a step further away from the past year. Whilst I will miss the luxuries of living at home with a very attentive and generous mother, I am looking forward to having my own space. I couldn't have coped with the past year without the support of my parents, but this is an important step to regaining my independence.

In some respects I feel like I have moved on with my life and have dealt with the cancer experience. However, things happen which make me feel like I am in the middle of everything. A good friend of mine asked me if I would loan my wig to her friend who has just started her treatment for breast cancer. Being the type of person who wants to help everyone, I said yes immediately and told my friend just to let me know when she would like to pick it up. My friend suggested that I go with her to visit her friend and we can deliver the wig together. Again, my initial reaction was to say 'yes' immediately, but then I thought about it. There are no photos of me when I was drowning in chemo and I avoided looking at reflective surfaces. I don't have a picture in my head of what I looked like when I was bald, grey and had dark circles under my eyes. I am not sure how I will cope seeing someone like that and thinking that is what I looked like also. One thing that I really want to do is to join the Cancer Council's Peer Support network, which I think would be incredibly helpful. I know how amazing it has been to have friends who are going through the same thing and know what it is like to have your life hijacked by cancer. I now understand why you have to be finished treatment before you can do this. Just when you think you are ok and your life is back on track, something will trigger you and you are right back in the middle of it. The other day I was talking to a good friend about losing my hair. It has been over a year since I was able to pull my hair out in clumps and it still makes me cry. Apart from having my parents tell me I was sick, losing my hair was the hardest part. I think that was the first time I realised that I was sick and going to get sicker.

That is all in the past and I am now all about the future. I have changed my picture on facebook. For those of you who know me, you will know that when all this started I had a picture of Kojack eating a chuppa chup. When my hair started to grow back, my picture was a Chia Pet. It is time to have a new picture of me. So once again, my face (and short hair) is on facebook. In the short term I am very much looking forward to Rugby Union season kicking off next weekend and being able to partake in a moderate and sensible amount of rum whilst enjoying the game. Go the Reds!

The very festive festive season

It has been a few weeks since I have managed to sit down at the computer and update the blog. The festive season has been very busy and festive. Many things have happened since I my last entry: had one year scans, still dealing with lymphodema, had by birthday and am recovering from Christmas Day. Let's take them one at a time.....


I had my yearly scans and mammograms a few weeks ago. I wasn't (consciously) feeling anxious about the results, I was feeling anxious about having my boobs squeezed flat like a pancake. Once again, I found myself sitting in the waiting room with a few women who were all much older than me. They were chatting amongst themselves and I was reading a magazine, catching up on celebrity gossip from 12 months ago. Anyway, one of the ladies was talking about her surgeon and how lovely he was. He was the same surgeon I had, so I said that he did my surgery and I really like him too. She looked at me and asked, 'What surgery did you have?'. I told her that I had breast cancer, it was then that she and the other women looked shocked. They said to me that I was a baby and so young to have gone through this. I used to be like that a year ago - thinking that breast cancer was the 'old woman's disease', but I have learnt my lesson the hard way. Anyway, the results of the scan were all clear and things are looking good. I need to see my surgeon in six months, but I am feeling pretty confident at the moment that I have kicked cancer's ass and it will be too scared to come back again!

I am still having treatment for my lymphodema and am now sporting a very stylish compression sleeve. It is supposed to be flesh colour, but I have never met a human with such an insipid shade of beige as a skin colour. It does seem to be helping, as does my very regular trips to the physiotherapist. I am a little annoyed every time I go and swipe my health fund card. My refund for each treatment is $22, so my out of pocket expenses are very high. I am sure it would be cheaper to have a crack habit. I have also gone to have a lymphatic massage with a therapist who has also had breast cancer. She was recommended to me and was very good. However, I walked in and within about eight seconds she had exposed herself to me; showing me her breast reconstruction and her new tattooed nipple! I didn't want to look at it, but thought it would be impolite not to seem interested! She was very kind and great, so I will be going back to see her (and hopefully NOT her new nipple) soon.

My birthday celebrations this year were in stark contrast to the celebrations last year! Last year I celebrated by having my wound drain removed in time for the Powderfinger concert. This year was another Powderfinger concert, but there was no wound drain removal required! We ended having my birthday party at home, which was wonderful. I got so many messages on my birthday from friends saying they hoped I was having a relaxing and decadent day. Preparing a party for 60 people at my house was not the most relaxing way to spend my day, but it was all worth it. It was a great night - filled with friends, family and french bubbles! I am starting to feel like myself again. When I look at the photos from that night, it seems like a long way from that day in the bathroom where I realised I looked like Uncle Fester.

Yesterday was Christmas Day and was another big celebration at the house. My immediate family consists of my parents, three siblings, two sisters-in-law, one brother-in-law, fives nieces and four nephews. So you can imagine yesterday was not quiet and relaxing, it was noisy and messy and busy and awesome! Last Christmas I spent most of it crying, trying to fake a smile and dreading the year ahead. This year I spiked my punch, swam with the kids and beat everyone at Just Dance on the Wii! This year has been the toughest one of my life and it was wonderful to be able to celebrate the end of it with my family.

This festive season has been far more festive than last season. I have thrown myself into celebrations for my birthday and Christmas and have thoroughly enjoyed them all. I am feeling hopeful about 2011 and am looking forward to a year full of good health, good friends and good times!

1st Anniversary

Today is exactly one year since my diagnosis. I have been thinking about this day for a while and I still can't work out how I feel. I am not sure if I feel happy, sad, nostalgic or just exhausted from the past 12 months. I am not sure whether I should celebrate or hold a memorial. It is just strange. When I think about what has happened in the past year, I am happy that the worst is behind me, but also sad because it is still not over. I am not ready to celebrate as my treatment has a few months to go and I am still dealing with side effects of treatment (ie. lymphoma and fatankles). I have been told that it can take up to twelve months for the chemo drugs to work out of your system. I find this strangely comforting, as I think if the cancer had the balls to come back, at least there is still something in my system to knock it out.

I am still seeing the physio for the lymphoma and am doing my daily exercises and stretches. I have been able to avoid having to wear a compression sleeve, which I am relieved about as it is starting to get steamy here; and a compression sleeve isn't the summer accessory I was hoping to purchase. I do have an array of stretchy tape going up my arm, across my back and around my boob. This is supposed to help create new pathways for the lymphatic fluid to drain, I am not sure how it works, but it appears to have helped. I also have to wear this bumpy pad thing (yes, that is the highly technical name for it), which is supposed to massage your boob. Think of it as a masseur sandal for your breast. One thing that I thought I would never have to do was pad my bra - but that is just added to the long list of 'things that I have had to do this year that I never thought I would'.

As I have said before, I don't feel like the old me and not sure how I feel about the new me. I know that I still hate my hair and don't really recognise myself when I look in the mirror. So many people have said to me how I suit short hair. The comments have ranged from 'it really brings out your eyes' to 'you are lucky you have such flat ears' to 'you have great high cheek bones to be able to carry it off'. Whilst that may be the case - it still doesn't make up for the fact that I had long hair until I got cancer, had chemo and became bald! Having high cheek bones and flat ears isn't much of a consolation. I know that people are being kind and trying to make me feel better about my post chemo fuzz, but nothing is going to make me feel better about it.

Over the past few weeks, I have been reflecting on the year that was. Whilst it was a tough year, I discovered I was tougher. I remember at the beginning, some friends didn't know what to say. One friend called me and could only swear to me on the phone. One friend told me to look to Belinda Emmett for inspiration (that didn't really give me much comfort since she passed away from breast cancer!), but I knew my friend was trying to be supportive. I have been speaking to family and friends about how they heard the news. The day I found out was such a haze, I can't remember who I called and who I texted and who found out through the grapevine. I was talking about that day with my mum and she still gets very emotional about it.

The year has both gone quickly and slow. Going through chemo I felt every minute of every hour of every day. Since I finished radiation, the year has gone very quickly. Getting back into the routine of work and immerse myself in a new challenge has made the past two months fly by. I can't believe that next week is December and more importantly the week after that is my birthday! Birthday plans are in full swing and it should be a fun night. I am having my check-up and scans before my birthday, just like last year, although unlike last year - this year the results will be something to celebrate!

2010 has hopefully been the worst year of my life, but luckily I have had the best of friends and family to help me get through. I am looking forward to seeing the back end of 2010 in a few weeks...bring on 2011!!!!!

Almost a year has passed

Almost a year has passed since my world imploded, it was November 25th 2009 when I found out I had breast cancer. Coming up to the one year mark, I feel a bit weird. As I reflect on the past 12 months, I realise just how much has happened and what I have gone through. I have spoken to some friends who have also just passed the 12 month mark and they have the same mixed emotions. On the one hand, I am happy that it is almost over, but on the other hand I feel exhausted from having to fight against it. It is unusual for me not to be able to convey how I am feeling, but the best way I can describe it is - weird. Things just feel weird. It is like I don't fit into my old life, but am not quite ready for my new life. I am not worried about going for my 12 month scans and mammogram; it may be naive of me, but I am not worried about the cancer coming back. There is nothing I can do to stop it returning, but I kicked its ass once, I will do it again if I have to (which I am really hoping I don't!).

Last weekend I went to the Relay For Life, which is organised by the Queensland Cancer Council at the RNA. It was amazing to see the amount of people who where there to support people who have been lost to cancer and are still fighting against it. They had a candle light ceremony which ended in a video montage of images of the people that have been lost to cancer. I am not sure if it was the photos or the Sarah McLauchlan song that went with it, but it hit me like a smack in the head - why me? I don't mean 'why me' as in why did I get cancer, but why did I survive it and they didn't. There was one lady who was diagnosed and passed away four weeks later. How can you be happy in your life and then be gone in a month? How can you fight against something in a month? It makes no sense to me. It has really compounded the feeling that I want to give something back to the people that have helped me through the past year and also to the people who are going through this battle. I know a lot of people refer to it as a journey, but I am not a fan of that term. Journey brings up images of driving along a country road with the wind in your hair and a cool soundtrack blasting through the car stereo. Cancer has no cool soundtrack and the only wind that you have is caused by chemo and has the toxic power to knock out a small child.

My treatment continues and I continue to battle with fatankles. Although my fatankles now have a friend - fataboob. I have lymphodema in my left boob. I had the humiliating experience of having to have my breasts weighed. It was all very technical and done using a Tupperware kitchen scale. I was surprised to know that the affected boob weighs one and a half times the unaffected boob. So you can imagine the difficulties of buying a bra that makes both boobs comfortable and happy. I am seeing a physio who specialises in lymphodema and cancer rehabilitation therapy. She is amazing and has taught me a lot of things that I can do to ensure that the condition doesn't get worse. I am required to sleep in a compression bra, which not nearly as sexy as it sounds. I am also required to do special massage to get the fluid moving; which resembles feeling yourself up, but I am told it has a medicinal purpose!

Overall, life is pretty good. Work is going great and I am loving it. I am also busy planning my birthday celebrations. Hopefully, this year they won't be highjacked by cancer! It is almost Barney's first birthday too. He continues to grow and is now the size of a small horse, pretty soon I will be able to put a saddle on him and charge kids for a pony ride. My focus for the next few weeks, coming up to the anniversary, is to remember how far I have come and not to dwell on the bad stuff. Treatment was horrific, but I got through it. It is the getting through that I will focus on.

The fatankle drama!

I am entering my third week of my new job. I am working four days a week and I am not sure how I managed to work five days in a row!!!! This working thing is exhausting, but I am loving it. I will never love the public transport part of working, but I love having to get up in the morning, get dressed and have a purpose that doesn't involve doctor's appointments and hospital trips. Although, these last two will be a part of my regular life for some time to come, at the moment they are not my focus. It is great to be part of a team again and I am learning a whole new industry. Who would have thought that the energy, oil and gas industry would be so full of acronyms! My post-chemo brain is getting used to them all.....slowly.

I started my new job the day after my Herceptin treatment and at treatment was advised by the doctor that I 'may experience some slight swelling' in my ankles and feet. Wednesday was the first day that I noticed any change in my lower extremities. By the time I hobbled home on Friday night (and the hobbling was not due to espresso martinis), my feet and ankles were enormous. I measured my left ankle and at its peak it was 49cm in circumference. This was roughly the same size as my nephew's head when he was born. I wasn't too worried, and since I wasn't experiencing any heart issues (which can also be caused by Herceptin) I didn't go to the hospital on Friday night. I was slightly worried that my feet may explode at some point during the night, so slept with them elevated (may be too elevated as I was the shape of a V during sleep) and when I woke up they were not quite at grotesque. The oncologist advised that I should get some Lasix tablets to help reduce the swelling which would allow me to be able to bend my ankles and walk normally again, as opposed the the ice-skating inspired glide I had mastered over the previous 12 hours. My dad very kindly arranged for the script to be filled from Canberra and all I had to do was pick up the tablets from the local chemist. I diligently took two tablets every morning, but didn't see much change. At the end of each day I would have to resort to the ice-skate glide to move around and my feet would have the indent of what ever shoes I was wearing that day. After five days of taking the tablets, Dad discovered that the chemist had given me Losec, not Lasix, and whilst Losec is very helpful for the irradication of stomach ulcers, it turns out it is not so good at helping with fatankles. Anyway, I have started on the right tablets and the excess fluid is now escaping from my body at a rate that Phar Lap would be proud of.

I have continued going to the young women's group, which has been great. Speaking with the other women has made me realise that I am well on the way to mental and physical recovery. I am not the type of person to worry, so I do not worry about recurrance rates, fertility and life expectancy. If I was going to live by statistics, then I shouldn't have gotten breast cancer at 34. The group did make me start thinking about the possibility of early menopause. None of my doctor's have mentioned this word to me, but I knew that infertility was a possibility, I just didn't make the connection that it was due to early menopause. I was not looking forward to the hot flushes, mood swings, dry skin and excessive body hair. After losing all my body hair, I was going to be really annoyed if I came back looking like a Wookie. I was advised that if my period could take up to two years to return, if at all. Anyway, in true super fertile form (just like having 20 eggs harvested after ten days of hormone treatment) my ovaries have kicked in and have started working just three months after chemo finished! I never thought I would be so happy to require the regular use of sanitary products.

I have treatment again next week. The three weeks seems to come around more slowly and I think it is because it doesn't take me two weeks to recover, like chemo used to. I now have more time where I am feeling like myself and am not curled up in the foetal position on the couch. I just hope that the fatankle drama doesn't happen every treatment, it really was painful and grotesque. I sent a few friends the picture and it took them a while to work out that the horrid, hobbit like foot was actually human and belonged to me! Although, one good thing about having such fat ankles - it makes your thighs look skinny in comparison!